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Warmest,

A.

Mayer Revisited

Hey All,

Sorry it's been so long since our last update. We had a long summer on the election trail and are just settling back into a normal routine now.

This will also be a quick post to let you know we will be re-launching our website this weekend and we are quite excited about it!

On Tuesday, Isaac and Gabriel will have the opportunity to say hello to their hero, John Mayer, in Toronto again. They are thrilled! As I type away, they are watching the online webcast of his live concert from New York. We'll be sure to update after the show on Tuesday.

Thank you for staying with us over the years. Your support has helped us make a difference in Isaac's life and we can't thank you enough.

See you this weekend,

Andrew

THANKS!

Hey Folks,

Very quick post today, just wanted to extend a sincere thank you to two students from Kingston, Ontario for their kind, caring, and sincere effort to help find a cure for Isaac.  Kelvin and Alex took a week away from their recess breaks (the best time at school for kids!) to sell books that they made.  All proceeds went directly towards The Isaac Foundation.

Empathy is the most difficult emotion for children to understand.  It's clear that Kelvin and Alex truly understand.  Thanks, boys!

Best,

A.

An Update, with Thanks.

As I type away at this long overdue blog entry, I am sitting on a plane to Vancouver, eager to take my place as a delegate at the Federal Liberal Convention.  The time alone, the dim lights of the airplane, and the beautiful view out my window have finally allowed me time to look back at the past few months and reflect on where we are on this long journey and look forward, just a little, to see what the future holds for us.

Thankfully, Isaac continues to be in excellent health and is, perhaps, as healthy as he has ever been.  He continues to grow, his joints appear stable, his heart condition has improved and his breathing sounds less laboured.  He continues to thrive in his Kindergarten class, under the watchful eye of his wonderful teacher, Ms. Rutherford.  Isaac craves knowledge, and he enjoys the people that feed that craving.  His love for life is very evident and his laughter infectious.  Watching him play with his brother, his best friend Gabriel, inspires us and warms our hearts. 

There isn’t a day that passes when we aren’t thankful for everything that we have in our lives.  While this journey has been incredibly difficult, it has also been a rewarding experience that we cherish.  We have been able to learn valuable lessons about ourselves and bond as a family in ways I had previously never imagined possible, and we learn more and more each day.

The past few months have been busy as far as Foundation work goes.  We worked hard on our Christmas mail-out campaign and were blessed by many generous donations to our organization and our fight for Isaac.  We appreciated all the kind notes that came our way and enjoyed the opportunity to update our supporters about Isaac and our fight for a cure.  In addition, we continued to grow our support base, inform the public about MPS VI and advocate and support families across the world that are, unfortunately, beginning the battle we are now fully entrenched in.

We fully recognize that it is harder to manage this fight for our son without the support of our friends, family, and the broader community around us.  Our volunteers have been instrumental in keeping our momentum moving forward and, as National Volunteer Week kicks off, we would like to thank all of you that have worked so hard to keep us going.  The long nights and early mornings spent planning and implementing our fundraising events are made easier with your involvement.  From the marathon runners and family walkers at our RUN FOR ISAAC! event, to our dedicated team at the celebrity golf tournament, to my group of grade 8 envelope stuffers, please understand how much we appreciate the impact you have on our lives.  I wish we could recognize you more for the work that you do and we look forward to celebrating with you when we finally find a cure for our son.

Special thanks needs to be extended to two such volunteers, Alix Hall and Jasmine Ma., for their efforts organizing the Victoria Hall Charity Run for Isaac this past March.  The event was an incredible success, thanks in large part to the dedicated efforts of Alix and Jasmine.  Because of their determination, their small event turned into a large gathering of support for The Isaac Foundation.   Their efforts helped to raise over $1700 and help us pave the way to fund more innovative research into finding a cure.  Both Isaac and Gabriel attended the event, cheered on the runners, and charmed their way into the hearts of many new supporters.  I won’t soon forget the beautiful image of my two boys running to meet Ellen as she raced towards the finish line.  Thank you Alix, and thank you Jasmine for your work, for your drive, and for your desire to make a difference.  It may be overdue but please understand how heartfelt our appreciation is.

Our recap of the first quarter of 2009 cannot be complete without recognizing the tremendous support we received from Toronto Blue Jays Ace and Major League All-Star Roy Halladay, and his compassionate wife Brandy.   Roy was selected as the Toronto Sun Sportsman of the Year for his generous work in the community.  Part of his award was a donation to the charity of his choice and he selflessly selected The Isaac Foundation.

We were fortunate to meet Roy and Brandy during our 2008 visit to Doc’s Box, a private suite at the Roger’s Center that the Halladay family provides to kids from the Hospital for Sick Children in Toronto.   They have renovated the suite specifically for the benefit of the children and both Roy and Brandy work hard to ensure that sick children are able to escape reality of the harsh world around them for a few hours and watch the Blue Jays play from the comfort of their box.  Roy ensures he takes the time to visit the children and their families before game time, signs balls for the kids, and answers their questions about his life in the the Big Leagues.  Brandy, ever patient, kind, and considerate, watches the baseball game with the families and ensures that she provides a warm and comforting environment for all of her visitors. 

During our trip in July 2008, Brandy and Roy were able to provide our family with some much needed downtime in their suite.  We had just finished our week-long stay in the hospital and received our invitation to watch the game from Doc’s Box.  It was here that both Brandy and Roy made a special connection with Isaac and Gabriel and it was here that the Halladay’s support of The Isaac Foundation began.  From here, Brandy and Roy advocated for our son and our organization, vowing to bring awareness to our cause and our tireless hope for a cure.  Brandy worked to promote The Isaac Foundation during telecasts of the baseball games and stayed in contact throughout the ball season in order to get updates on Isaac’s health.  At the same time, Roy became a hero for Isaac and Gabriel as they watched him pitch on the television screen.  The look up to him and enjoy seeing him play baseball and they pretend they are both “Roy Holiday” as they learn to throw and catch a ball of their own.

Roy has, in my eyes, also become a mentor, but not because of the magic he works from the pitcher’s mound.  While he is, undeniably, the best pitcher in the Major Leagues, and he has won countless awards during his illustrious career, it needs to be remembered that there have been many “best pitchers” before Roy Halladay and there will be many more “best pitchers” after him.  He has, like so many others, left his mark on the game of baseball but it is the impact that he has had on the life of our son, the example he sets for those around him, and the perspective he has on life that I truly respect.

Roy and Brandy work to bring joy to those that surround them and they endeavour to provide opportunities to countless people less fortunate then themselves.  They are giving of their time and patient with those in need.  Most importantly, they are parents themselves and they truly work hard to teach their children through the examples they set. They take joy in helping others and pride in their efforts to make this world a better place. They are kind, and caring, and compassionate; they are empathetic and loving, and they encompass all the positive qualities that any parent would want to share with their children.  They have perspective, and they recognize the important things in life.

This was evident for our family during our visit to the Roger’s Center for a special presentation to The Isaac Foundation before the game on April 7^th, 2009.  Roy was receiving his Sportsman of the Year Award and asked us to be on hand to celebrate with him.  The sheer joy that came from him as he saw Isaac and Gabriel running toward him is something I will never forget.  The kindness he showed them, the love he gave them, and the genuine excitement he had while interacting with them all stand out vividly in my mind.   Roy Halladay, the person, was being celebrated on that night, and he ensured that our children got to share in the celebration with him.  He took the time to visit with the boys and scooped both of them up in his arms during the video presentation to the crowd.  He truly cared about our children and vowed to fight for our son alongside our family.

Long after his Major League Baseball career has come and gone, Roy Halladay can look back on his accomplishments and have every reason to be proud.  The Cy Young Awards, the records, the strike-outs, and wins will mark his history and his place in the game.  But it will be his accomplishments off the field, the love he has shown their children, the example he has set for them, the lives he’s worked to impact and, hopefully, the part he played in finding a cure for Isaac, that he will forever be defined by.   I’ll take a good person over a good baseball player as a hero in my life any day.  In Roy Halladay, I have both.

Well, plane is now landing and I’m realizing that I’ve been typing for far too long.  This weekend will bring me incredible joy as I follow my dream of standing for public office and follow my passion for advocating for those in need.  I’m glad I’ve had this time to reflect on the past few months and I’m glad I’ve had the opportunity to dream again about our future.

I’ll try to update more regularly.   Thanks, as always, for your support.

With Love,

The Isaac Foundation

Doc Delivers As Role Model - Donates Prize to The Isaac Foundation!

From The Toronto Sun - December 2008

The trophies sit alongside a stairway inside the Halladay household.

The 2003 American League Cy Young Award presented to ... Roy Halladay.

In front of it stands a silver horse, the American Quarter Horse Association Rookie of the Year trophy presented to ... Brandy Halladay.

The Halladay house of honour in Odessa, Fla., now has another award.

Roy Halladay, the Blue Jays' ace right-hander, is the winner of the fifth annual George Gross/Toronto Sun Sportsperson of the Year award. The award goes to the athlete judged to have had the most impact on the Toronto sports scene in 2008. A $1,000 donation will be made in Halladay's name to the charity of his choice.

Halladay was selected over nominees Mats Sundin of the Maple Leafs, Chris Bosh of the Raptors, Daniel Nestor, a doubles winner at Wimbledon, Don Cherry of Hockey Night in Canada and Jays manager Cito Gaston.

Previous winners are Mike (Pinball) Clemons of the Argos; the Toronto Rock lacrosse team; Cassie Campbell, captain of Canada's gold-medal winning Olympic women's hockey team; and Bryan Colangelo, Raptors general manager.

"Wow, it's good company. Both the past winners and the people in contention this year, have all done a lot for sports in Toronto and Canada," Halladay said of the list of names. "Obviously, getting picked is an honour. It's nice to be associated with all those names."

Halladay has been a mainstay of the Jays for a decade, since bursting into prominence as a 21-year-old in 1998.

In his second career start, he took a no-hitter into the ninth inning against the Detroit Tigers.

That game was no fluke. He won his Cy Young five years later and, this past season, was a 20-game winner for the second time. A workaholic on a "don't stop until you drop" program, his fitness enabled him to throw 246 innings and finish as the runner-up in Cy Young voting to Cleveland Indians lefty Cliff Lee.

Halladay's rise has not come without its setbacks. He has a career record of 131-66 -- 113-49 since he was demoted from the major leagues back to class-A Dunedin in the spring of 2001 to re-invent himself as a pitcher.

"A lot of things changed for me then," Halladay said.

But it is not just on the ball field where the 6-foot-6, 225-pound star shines. He and his wife Brandy are known for their involvement in the community, and especially their work with children. If there is a role model in sports definitely worth emulating, Halladay is your man.

"I try to be as helpful as I can, be a good person," Halladay said this week when informed of his most recent accolade. "I feel it is more important to be a good person than a good pitcher. I had to get to the point where I liked the person I was, regardless of what happened on the field.

"You play for a short period, substance is more important. It's more important that you are a good father, a good husband and a good person in the community. That really defines who you are."

Besides pitching every fifth day and trying to go nine innings, Halladay and his wife entertain 10 to 15 children from the Toronto Sick Kids Hospital in a Rogers Centre Skybox on Sundays.

"We go up, say hi, take pictures," Halladay said. "We're trying to move forward in other ways. They've upgraded and updated a lot of rooms at the hospital. Some still need more, we're trying to improve some of their treatment rooms."

Halladay went 20-11 in 33 starts this past season, his 11th with the Jays -- and first since age 12 without mentor Bus Campbell. Spring training 2008 began with a flight from Tampa to Denver for Campbell's funeral.

For years, Campbell, having charted pitches after watching on the satellite dish that Halladay had purchased for him, would call his former pupil.

"This year was different, I was used to being able to talk to him," Halladay said. "With the people we had in Toronto (pitching coach Brad Arnsberg), unless it got drastic, we were pretty good at fixing things."

Halladay fits the sexy tag of franchise player, despite talk that the rebuilding Jays should deal him for three or four players.

"Playing my whole career with the same organization is something I'd like to do, something everyone would like to do," Halladay said. "The hard thing is it takes two parties to agree on it."

Halladay is humble, as one friend says: "Humble enough to be mistaken for a Canadian."

"I don't need much," he answers when asked if he gets the proper credit. "People in Toronto are grateful -- any time I run into someone they are very complimentary."

Growing up in Arvada, Colo., one of Halladay's role models was two-time National League MVP Dale Murphy of the Atlanta Braves.

"I could not tell you any of Dale Murphy's stats but I know how great a man he was, what a family man, a father and what he did in the community," Halladay said.

So, how is Halladay a great father to his sons Braden, 8, and Ryan, 4?

"On the day they move out of our house, I want them to know that they got the best from me; that it wasn't about me, it was about them," the proud papa said. "I'd rather be their friend first."

And how is he a great husband, aside from allowing Brandy to take a turn at the TV remote control when his favourite show, Survivor, is playing?

"My wife has to take the back seat most of the season and put off some of her hobbies. It's easy, sometimes, in baseball, where everyone is talking about you, to forget," Halladay said. "I try to do more for her during the winter and put baseball on the back-burner."

Brandy has three quarter-horses -- Colby, Mutt and Certs -- boarded 15 minutes away at Showcase Farm in Lutz, Fla. She competes in English and Western riding disciplines at competitions around the Tampa Bay area.

Halladay's off-season support begins with him taking the kids off mom's hands on competition weekends.

A year ago, Brandy broke through with four wins at the Tampa Fairgrounds. The five judges gave their results with riders atop horses inside the ring, as husbands, children and boosters nervously waited.

"It was cool," said Halladay, who stood and cheered when Brandy got her first first-place finish. "It took her a while before there was a seventh (out of a field of 45) or an eighth. Then, that one weekend, Brandy had four (firsts)."

Brandy didn't receive a phone call from the AQHA secretary when she claimed the rookie of the year -- as Halladay did from Baseball Writers' Association of America secretary Jack O'Connell when he won his Cy Young.

"They base (his wife's award) on a point system and put it on the website, not a lot fanfare," Halladay said.

Provided Colby's tendons are 100%, Brandy will ride at competitions in Florida and South Carolina next month. She also hopes to make the All-American Quarter-Horse Congress in Columbus, Ohio in 2010.

With husband supporting wife, with wife supporting husband, this is an award-inning household.

Braden Halladay, a ferocious 58-pound nose tackle, played for the East Lake Eagles in the Little League Super Bowl. Games are played at 8 a.m., so that means a 6:30 weigh-in for the under-60 pound division.

The mighty Eagles got off the final play with nine seconds remaining and scored the only touchdown with zero time on the clock to beat the Countryside Cougars 6-0.

"The parents went crazy at the end, not me," said Halladay, who cheered on the Eagles.

East Lake was given a trophy and all the players received a medal.

And where is Braden's medal now, hanging over the stallion's head alongside the stairway?

"Actually," Doc said, "it is."

Christmas at Sick Kids

As I type this long awaited blog update, I’m sitting on the 4th floor of The Hospital for Sick Children in Toronto, our second home. I’m overlooking the atrium, much quieter today than on most days of the year here. It’s Christmas Eve and most people are home with their families…today is a day for the most urgent procedures and appointments.

Isaac, Ellen, and Gabriel are here today to spend the day together, get Isaac’s infusion, and enjoy the anticipation as it builds until Santa’s arrival tonight. I have to say; being at Sick Kids’ on Christmas Eve definitely is one of the most humbling of experiences. It’s calm here, and it’s providing me an opportunity to look back on the past year and look forward to everything that is yet to come.

It has been another year of highs and lows and we are grateful for all of the support we have received from friends, family, and the general public. We are truly humbled by the kindness that continues to pour in, offers of donations, and warm and supportive notes that come our way in the mail and via email. When we get down or things look bleak, it is these encouraging messages that give us the extra boost we need to stay positive and battle through. Thank you to everyone, you’ll never know how much we appreciate your support in our times of need.

This year also saw some incredible people chip in to support our cause and, more importantly, bring some cheer and joy to Isaac. Musicians John Mayer and Danny Michel proved to us that music does make a difference, and they both selflessly took time to visit with Isaac after their shows, something that we will always be grateful for. The look on Isaac’s face as his hero’s played their music on stage will never be forgotten, nor will the everlasting smile and the stories he has told about his time with them.

We also have been fortunate to have the support of Brandy and Roy Halladay. Roy is a pitcher for the Toronto Bluejays and his wife, Brandy has been working to raise awareness of Isaac and MPS throughout the course of the past year. We met both Roy and Brandy during a trip to the baseball game (Roy donated his box to the hospital in order to give some of the kids a nice day out). Brandy went further and promoted our cause on the television during one of the Bluejays telecasts and has kept in touch since the season ended.

These two musicians, as well as Brandy and Roy Halladay, took a step back from their busy lives to make a difference in the life of my son. They realized that they are in a position to help and have worked to spread awareness of Isaac and his disease, knowing that someone listening and reading might be able to help us find a cure. Thank you Danny, thank you John, and thank you Brandy and Roy, for your unrelenting kindness.

Better end this blog for now. Christmas Eve isn’t a time to be wasting the day away on the computer. Even though were here at the hospital, I’m glad we’re here together and enjoying the day as a family.

Merry Christmas to Everyone,
With Love and Thanks,
Andy, Ellen, Isaac, and Gabriel
The Isaac Foundation

Isaac Meets Another Hero, United Way, and First Day of School!

Hi All,

Well, here we are again with a month or two (or three?) going by without a blog update.  Things seem to get busy and the first thing to suffer is the blog!

Since our whirlwind summer and the excitement for Isaac over his meeting with John Mayer, things have been going extremely well.  Most significantly, Isaac started school in Campbellford.  He's thriving under the kind and caring guidance of his teacher, Ms. Rutherford. While it truly was a difficult experience sending him away to school, we are conforted by the knowledge that Ms. Rutherford is his teacher.  Isaac comes home and speaks so highly of his teacher and his love of school that letting go has been a bit easier than we thought.

This past weekend, Isaac and Gabriel had the opportunity to meet one of their heros, Danny Michel.  Danny has just released an incredible record called Feather, Fur, and Fin (www.dannymichel.com).  I never thought that John Mayer could ever be replaced on Isaac's iPod, but Danny Michel has done it!  Isaac and Gabe wake up most mornings and give us a concert on the living room couch.  They throw the pillows on the ground, crank up the iPod to Michel's "Sweet Things" or "I'm A Love With You Anyway" and they sing and dance away!  I'll have to record a decent video and upload it soon because it is such a cute site to see!

Anyhow, Danny Michel has been touring with our friend, Stuart Mclean from CBC Radio's The Vinyl Cafe.  The kids were getting old enough for us to be able to make our first trip to Stuart's show, and when we discovered that Danny Michel was the special musical guest, we had to go!  For about a month, the kids talked about how excited they were to be able to meet the singer, and Danny didn't disappoint.  He took the time to say hello to the kids during the Intermission and then spent some quality time with both Isaac and Gabriel after the show.  Pictured above is a grainy (sorry!) image of Isaac with his new pal.  Even though the kids were exhausted (it was 10:30 by the time the show ended!) they were relatively well-behaved and sociable.

We were so pleased for our kids that they had the opportunity to meet one of their heros.  However, Ellen and I were more impressed with how caring Danny Michel was.  It's one thing to take a minute or two for a few young fans, it's another thing to spend some quality time with them and truly make them feel important.  Danny Michel didn't make the kids feel like they had to rush through their time together.  He pulled up a chair and talked with my kids like they mattered.  He played with them and laughed with them and, in essence, maintained his status as a hero in their eyes.  

All too often we hear about musicians becoming too big for their fan base.  From what I saw of Danny Michel last night, he has his priorities straight and deserves all the stardom that will come his way.  

By the way, he's an incredible musician as well!  Please drop by www.dannymichel.com and check him out.  Remember, he's officially endorsed by Isaac and Gabriel!

On another note, United Way has begun their annual fundraising campaign.  If you are in the habit of giving through your workplace, either for a one-time donation or automatic payroll deduction, you can have your donation directed to The Isaac Foundation.  Simply fill in our business number on your form.

Thanks for your support.  

The Isaac Foundation

OK Magazine Upload

Hey All,

Here are a few snapshots of the latest OK! Magazine. Isaac and John Mayer get a little photo and quick write up on the same page that the wedding gossip about John and Jennifer Aniston takes place.

Thanks again to John for allowing them to print this bit, and to Lauren for releasing her photos to the magazine!

Best,

A.

OK! Magazine, Isaac and John Mayer

Hello Everyone,

Isaac's photo with John Mayer, as well as a short write up about their night together at the Toronto Concert, will appear in the latest edition of OK! Magazine. If you're in a larger centre, the magazine should be on the rack today. Smaller centres will have it available by Friday.

The cover of the edition you should be looking for is on the right.

Thanks to Lauren Trazaska (www.soundcapturephotos.com), Mayer's official photographer, for allowing the magazine to use her beautiful photos. Lauren ended up being our tour guide for the meet&greet and we could tell immediately that she was a wonderful person. She was patient with Isaac and allowed him to look around backstage, play with her camera, and ask as many questions as he wanted. She's an amazing photographer and we appreciate her sending the shots to the magazine.

Isaac is doing well. We'll try to upload the article as soon as we see it.

Best,

The Isaac Foundation

Almost Home...

Hi Everyone,

One week away and we get to go home after treatment today. We will finish the week as it started…treatment (Enzyme Replacement Therapy) at Sick Kids’ Hospital in Toronto. We’re all exhausted after such a long week, but it’s a good exhaustion because we know everything has gone well with Isaac. He’s hearing much better and his breathing has dramatically improved. Still, it will be nice to be at home for the first time since last Monday.

It has been quite a surreal 7 days for our family, starting with our John Mayer concert on Monday and finishing with a trip to the Blue Jays game on Sunday (we all watched the game from Roy Halladay’s private box with some other kids from the hospital!) Mayer’s experience with Isaac and his subsequent blog about their time together started a whirlwind of interest in our son and The Isaac Foundation. We’re so fortunate that John took the time to raise awareness of Isaac and his disease and we’re indebted to him for his kindness. Blog sites have linked to our pages, wonderful and caring people from around the globe are taking the time to email with kind words of hope, and generous individuals are taking the time to donate to help us fund research projects and find a cure. We really are blessed to have so much support and we know that we will find a cure for Isaac and other affected children worldwide.

As I type this entry, Isaac is fast asleep in the chair beside me, the Enzyme he so desperately needs is slowly dripping into his body. A little boy, 13 years old, has just rode a small tricycle into our room. Incredibly, he has the same disease as Isaac. He has been visiting from Germany for the past 3 weeks and has been receiving his Enzyme Replacement Therapy here at the hospital.

Watching him puts in perspective just how lucky we are that Isaac started treatment so early. This child has suffered greatly during his 13 years and has just begun to receive his treatment a few years ago. Before ERT started, his growth had shut down, he underwent a tracheotomy, and he lost the ability to move his arms and legs. He also cannot speak. Since treatment began, he has begun to regain the ability to move his extremities and now rides his tricycle everywhere he goes.

To me, seeing this child here is like getting a glimpse into the future we would have had if we hadn’t fought to get Isaac on ERT to slow the progress of the disease. Without certainty, Isaac would have been that boy on the tricycle in a few years and that is something I can’t bear to think about. Watching this child ride around the hospital is both heartbreaking and beautiful to me at the same time because I know how much he has suffered yet I do see and feel that there is a glimmer of hope for him.

It’s moments like this that really bring to the forefront the dire need for a cure for this horrible disease. ERT is just a lifeboat for Isaac, a treatment to keep us afloat until we can figure this out once and for all. But occasionally I feel like our lifeboat is slowly losing air and that we’re running out of time. Finding out that Isaac’s breathing had deteriorated so rapidly (we had a normal sleep study just one year ago) was difficult to handle. It was proof positive, once again, that we’re still fighting a terribly progressive disease, and no matter how much the treatment is slowing it down, we’re reminded that we need to redouble our efforts and find a cure.

But finding a cure isn’t something that we can do alone. No matter how many nights we stay up late to send out tax receipts, or how early we get up to plan events, no matter how many weekends we spend at Isaac Foundation initiatives, we’ll never be able to cure this alone. I guess this is why we’re so thankful to John Mayer for bringing Isaac and his disease into the public light, even if it’s only for one shining moment. By simply putting news of Isaac on his blog, John Mayer has sent more traffic to our website than we had all of last year alone. He has sent the public in our direction and word about MPS VI has spread far and wide. Perfect strangers are rallying around our son and our Foundation and we’ve been reminded that we’re not alone in our fight for Isaac. I’m truly comforted by this realization. It’s that comfort that will bring us through the down moments and the difficult times, and it’s that comfort that will continue to help us find the strength to fight for a cure.

I remain confident that one day I’ll be uploading our blog entry with news that a cure has been found. I know that we will be celebrating the fact that the little boy on the tricycle has received a second shot at life, and I’m confident that Isaac will be alright and never have to suffer. And when that moment comes, we’ll celebrate together with those that have helped us along the way and we’ll celebrate with those, like John Mayer, that made sure we didn’t have to do this alone.

Anyhow, we have plans to take the train home today, something that Isaac loves to do.

Thanks for stopping in and for your support. Like I said, it’s comforting.

Warmest,
The Isaac Foundation

Join Our Facebook Group...

Below is the link to our Facebook group, which we use to send out our updates on Isaac and the Foundation. Please join up, and send it to your "friends" as well.

http://www.facebook.com/group.php?gid=2275845012

Warmest,
A.

Our DVD...

Hello All,
We've had lots of questions about Isaac, MPS VI, and our Foundation, and I'll do my best to get back to everyone as soon as I can. In the meantime, I thought I'd re-upload our DVD that we made when Isaac was first diagnosed. We put it together as a way to help raise awareness of this disease and to help push our Ontario Government to help fund the expensive treatment, which costs up to $1,000,000 per year.

Not sure how much it helped with our efforts, but it does get used by families around the world that have to experience the painful news that their child might have MPS.

The DVD contains a 3 minute slide show of Isaac and some family photos, an interview with Dr. Joe Clarke, one of North America's leading MPS Specialists, and information about The Isaac Foundation and our quest for a cure. the video is about 14 minutes long so grab some popcorn! And thanks in advance for sparing some time to see it...

As soon as we completed the DVD, Isaac did have a spinal cord decompression surgery to help alleviate the pressure that was being put on his spinal cord. They took out his C-1 Vertebrae and a piece of his occipital bone and it has helped dramatically! We also (obviously) got treatment brought to Canada AND covered by our provincial health care system. But we need a cure and we still feel the video explains who we are.

Thanks again for stopping in.
Best,
A.

Some Overdue Thank-You Notes and an Update on Isaac

Hello All,

I've finally found an internet connection, although I'm not sure how long it will last for. It's great to actually type on a blog entry on a computer! (I've been using my little mobile phone to update our blog recently...)

Isaac woke up this morning in a cheerful mood, and was raring to go! A BIG change from yesterday. He hopped onto his "big red car" and toured the floor we were staying on, played with CLUTTER the clown for a while, and then was discharged! We are currently out of the hospital but have to stay in Toronto until at least Monday due to a small chance of bleeding for Isaac. While this risk is normal, the fact that he has MPS and a difficult airway isn't and they want us close to the hospital and the best care possible.

We'll make the most of our time here in the city and will try to get out for a few walks down by the water together. As we speak, we're sitting out back on the patio and taking a moment to relax. Isaac is listeing to VULTURES on his new CD player that Andrea Hoover at the hospital brought him today. It's his "bravery" gift and he's been so cute with it all afternoon! On Sunday, we will be heading to the Blue Jays game with Isaac and Gabriel, sitting in the Sick Kids' Hospital box, and watching the Jays beat up on the Yankees! I think Roy Halladay is going to drop in to say hello to everyone in the box as well.

I'll try to keep this short but I wanted to send out some notes of thanks to our visitors for their wonderful comments and for helping us spread the word about our son, our Foundation, and our hope for a cure.

To those of you that have donated using our Donate Now! link at theisaacfoundation.com,

Thank You from the bottom of our hearts. We received notification about the donations while we were sitting in the hospital with Isaac and we were truly touched by your kindness and generosity.

To the person that sent a large, Anonymous, donation, we cannot thank you enough for your support. We are proud to report that over 98% of all donations go directly toward funding our research projects into finding a cure for MPS VI (the other 2% goes into stamps and ink to send out your tax receipt!)

And we're still so blessed by John Mayer's kind heart. His blog entry has spread throughout the Internet and we've received over 7,ooo hits on our main website since his online journal ran. Mostly, though, it has raised awareness of this devastating disease that we're trying so desparetly to cure. And John didn't do it because of the positive media that could have come from his generosity. He did it because he is a caring and compassionate person that truly realizes the important things in life. And if you disagree, check out his previous blog entries. This guy gets it, and he showed it on Monday Night. Thank you, John, for what you have done. While you already had a fan in Isaac, you now have a life-long friend. And your message about life's priorities has gone far and wide. I hope many learn a bit from your kindness. Life's too short not too.

Below is a message that Isaac recorded John. As you can see, he's looking great. Enjoy.

With Love,

The Isaac Foundation

John Mayer's Blog

Check out www.johnmayer.com/blog to see a beautifully written entry by John and some incredible photos of the band and Isaac. Special thanks to Lauren Trazaska (www.soundcapturephotos.com), Mayer's official photographer, for her wonderful shots.

I'll update the blog when I get a spare second.
Warmest,
The Isaac Foundation

Photos From The Past Few Days...

Hi Everyone,
It's been a crazy few days! Before I post a few photos, thank you to everyone that has taken the time to send an email, post a comment, or post John's blog on their site over the past 24 hours. For that matter, thanks for linking to our blog as well. Since noon today, we've had over 3 thousand hits on our website, mostly because of of Isaac's experience with his hero, John Mayer, in Toronto. The support that we have received has been humbling.

Isaac is resting well at Sick Kids' in Toronto. He's breathing well, probably better than I've heard from him in his entire life. And in the recovery room, he's remained true to form and has been watching his John Mayer DVD on repeat.

Below are a few photos that I captured on my cell-cam over the past few, very busy days. Sorry for the quality...seems I can't shoot proper photos with my cell phone!

Again, thanks for the support. I can't express how wonderful it feels to know that we are not alone in this fight for a cure.

Best,

The Isaac Foundatoin

Photo Info: Picture 1 - Isaac during Treatment on Monday - Watching his John Mayer DVD.

Picture 2 - Our Mayer Concert Picnic.

Picture 3 - Andrea Hoover with Isaac in the pre-OR.

Picture 4 - Our Favourite Dr. - Jengus Carslie before Anesthetic.

Picture 5 - Recovery Room with Dad.

More Info...

For our new visitors, please take a minute to learn a bit about our son, his disease, our Foundation, and our search for a cure at www.theisaacfoundation.com

As well, If you’d like to take 15 minutes to watch our story on youtube, our DVD about Isaac, his disease, and our hope for a cure can be found at http://youtube.com/watch?v=dcAQWUZV4nc. And finally, we’ve put our family gallery together, It can be found at www.theisaacfoundation.com/gallery

Best,
A.

Life Lesons from John Mayer

As I type this entry, I am sitting in the O/R waiting room at the Hospital for Sick Children in Toronto. The collective worry of the waiting parents make this room a very quiet and serene place.

Isaac has just gone into the Operating Room for his surgery, led by our favourite anesthesiologist, Dr. Jengus Carslie, and in one hour, all of our worries will be past us.

Ellen and I went back and forth this morning, knowing that today’s surgery is routine for most kids and that it will be quick. But we also know that Isaac isn’t most kids, and his airway has been our main concern every time he has to have an operation or an MRI. While ERT is supposed to help with airway issues, we’ve been very worried that his breathing has deteriorated so rapidly over the course of the year. We are fortunate that Dr. Carslie is looking after Isaac again today. Just knowing that Isaac is under his care makes this wait a bit easier to bear.

We know that we are blessed to be part of the family here at Sick Kids’ hospital. Andrea Hoover, the child life specialist that makes Isaac’s Tuesday visits special and memorable, dropped into the Operating Room area to see Isaac off and to help distract him before his surgery. She read books with him and made him feel at ease with the pending operation. As well,Isaac's friend, CLUTTER the Clown, has been scheduled to visit Isaac in his recovery room later.

I can’t imagine spending time in another hospital for our son. The smiling faces, caring staff, and tremendous standard of care are exactly what Isaac needs during the fight that he is faced with.

Last night, we had a wonderful evening out with Isaac’s new best friend, John Mayer. At about 3:30, we got word from Mayer’s staff that Isaac was going to get to meet his idol before the concert. We lined up with a group of contest winners for our time with John, Isaac’s anticipation growing with every passing minute.

Finally, Isaac spotted Mayer at the front of the line, posing for pictures with the other people in our group, and the smile on his face was priceless! His eyes lit up and the grin was bigger than I’ve ever seen before on our child! He kept whispering in my ear “There’s John Mayer! I don’t think he sees me yet,” and “Two more people and I get to see him!”

We thought Isaac was going to get the very quick hello and the quick photo that everyone in line got, and we would have been thrilled at that opportunity alone. But John spent a lot of time talking with Isaac, clowning around in front of the camera, posing with Isaac and shouting “Cottage Cheese and Yoghurt!” (Isaac’s pre-photo saying). Isaac wanted to know if Mayer was going to play his favourite song, “Vultures”, and John told him it was the song that was going to open up the show!

If it ended there, the night would have been a thrill. But Isaac wanted to know one more thing. As I’ve previously blogged, Isaac’s been spending most of his waking moments watching John’s new concert DVD “Where The Light Is.” While he loves the songs, the spot he keeps rolling back to is the moment with Mayer and his band are walking through the hallway from their dressing rooms on their way to the stage. The music is going in the background (“Waiting on the World to Change”) and the band look so full of energy as they take to the stage. Isaac wanted to see the hallway! For most of the day, he kept opening up the DVD booklet and showing people the picture of the hallway that Mayer and his band walk down. So Isaac asked John if he could see the hallway that led to the stage.

John told Isaac he would try to figure something out, signed his DVD for him, and we were on our way back to our seats. Ellen, Isaac, and I had a picnic on the pavement (beer, pizza, pretzels, and popcorn) while we waited for Mayer to take the stage.

(Note - They have just done a Stat Call for Cardiology to the Operating Room and I’m worried that it’s for Isaac. This is a feeling that I don’t wish on any parent. Doctor’s have gone running by the waiting room and, as I look around the room, nobody here seems as nervous as I am. While I know the chances that the call is for Isaac is remote, I still feel sick because I know that a parent here is about to go through a very painful experience.

Being here is always so very humbling. This building has given me the most difficult, painful moments of my life. But our time here has also been one of reward and promise. Going through this journey has brought us very close as a family and I have cherished every moment we have spent together. We have been able to put the true meaning of life in perspective and bask in the love that we share for each other. If I had to, I would do this all over again and not change a thing.

Anyhow, back to our update, although I think it will be more difficult to type with my now shaking hands…)

While we were waiting for the show, we got a call on our cell phone with someone asking for us to meet backstage again – John had a special surprise for Isaac! Before every show, John and his band do a special cheer, a sort of team-building, bonding cheer to that prepares them for the night on stage, and John wanted Isaac to be part of the cheer.
We got back stage, John introduced Isaac to the band, and they got together for the group cheer, this time down on their knees at Isaac-level. Everyone put their hands in and they asked Isaac what his favourite words were. After a bit of thought, Isaac responded “JOHN MAYER!” The band looked around at each other and John said, “Well, OK. John Mayer on three,” and the cheer went up!

It was a beautiful moment and I was so impressed by Mayer’s thoughtfulness and his patience with our son.
After this, it was down the hallway and onto the stage to the waiting crowd of about 20,000 screaming people! And Isaac got to walk with the band!

It’s important to note that I think they had to find a hallway to walk down because we seemed to take a round-about way to the stage. But John led the way, followed by Isaac (and Ellen) and the rest of the band. And they went all the way to the stage! And onto the stage! In fact, Isaac, Ellen, and I sat and watched the show from the speaker on the side of the stage, Isaac with a beaming smile the entire show.

Leaving the stage, Mayer gave Isaac a high-five, came over to me and said “Don’t worry…we’re going to figure this out.” Whatever comes of anything, I know that he is right because I know in my heart that we will figure this out, no matter what it takes. And all the hard work and sleepless nights, and the many events and presentations we deliver, will all be worth the tireless effort.

And the people we meet along the way will be with us to celebrate when we finally announce that we’ve found a cure for Isaac. I dream of that day often, and I know the soundtrack for our evening of celebration will be John Mayer's music.

I was so impressed by John Mayer last night. Not because he put on an incredible show (and he did!) but because of the caring and compassionate way he treated my son. John took time out of his busy schedule to provide Isaac with a positive life experience, one he won’t ever forget.
He was genuine and good, proof that he truly means what he writes about on his blog.
In his latest entry, Mayer writes “It’s a funny time to be alive right now, in that I’m not quite sure we’re celebrating like we should. I don’t mean the ‘hand me your keys, Dan!’ celebrating. I mean the inate act of 'celebration’ human appreciation. Group reveling. A general sense of ‘This is my tribe and this is our fellowship.’ Like a concert.” Mayer put his words into action last night as he celebrated our son with our family. He gave us all ã moment away from it all and I will never find adequate words to properly thank him for his kindness.

Mayer also writes about the challenges that people will inevitably face in their lives: “Chances are you won’t get hit by that proverbial bus people always talk about when they’re smoking a Lucky Strike and tipping back on their chair. Odds are also on your side (thank-God) that you won’t ever get the news from your doctor that you have only months left to live. But you know what he may very well tell you? That you need a new hip. Nobody ever says ‘live it up because someday you might need a new hip’ but it’s the truth. They don’t say ‘Be good to one another because in time we’ll all know a medical lab technician on a fist name basis’ but it happens every day.
My point is that whenever that someday comes, when I slide into the MRI scanner and the thing starts spinning up, spitting lasers and screaming into my ears, I may very well say to myself ‘I wish I had just one more of those summers.’”
Mayer is right, and it didn’t take a death in the family, or a devastating diagnosis for him to realize the importance of celebrating each and every moment.
As a family, we understand this as well. Make the most of your time, enjoy your family, and cherish every moment you have together. Remember, you never know what's around the bend.

Anyway, Isaac should be coming out of the Operating Room at any moment. I’ll update more later and try to send some photos when I can.

Thanks for hanging in there with us.

PS – Doctor just came out – Isaac is fine! No airway issues to deal with, thank God.
With Love,
The Isaac Foundation

More Ups and Downs on Our Journey

Hey Everyone,

It's been a month of ups and downs for us here at the Isaac Foundation. A few weeks ago, we hosted an incredible Celebrity Golf Tournament. We were pleased to be joined by Rob Baker and Gord Sinclair of the Tragically Hip, Ryan Malcolm of Low Level Flight, Larry Mavety of the Kingston Frontenacs, Former NHL great Bart Crashley, and the Speaker of the House, Peter Milliken.

24 teams joined us for the event and helped us raise over $15,000 to support our hope for a cure for Isaac. In addition, Susan Henry and Janet Grace from Royal Lepage were on hand to deliver a cheque for $2,000, part of their charitable donation from profits on the houses they are buying and selling.

Ellen did an amazing job organizing the silent auction for this years event and it was wonderful to see the response from our guests. We send out a big Thank You to all of our sponsors, which included West Jet (tickets to anywhere in Canada!) and Via Rail (first class trip to Quebec City!)

Shortly after the event, Isaac was scheduled to have surgery. He's been having difficulty hearing lately and we decided it was best to have tubes put in his ears to try to correct the problem. At the same time, his breathing hasn't been great. While he was under, the doctors figured they would also take out his tonsils and adenoids.

A few days before the surgery, the hospital called and scheduled us in for an emergency sleep study in order to gauge the need to take out the tonsils during this surgery. With Isaac's airway being poor, it was best to have a look at the need for the surgery in the first place. Isaac and I headed off to Toronto for the overnight at a private clinic on Young Street.

It's amazing how incredibly brave Isaac is during these visits to hospitals, clinics, and appointments. While I wasn't nearly as calm (or brave), Isaac rose to the occasion, helped the clinicians hook him up to the machines, and slept beautifully, all while maintaining his cheerful and positive attitude throughout.

Before we left in the morning, I had to fill out the survey, ranking Isaac's sleep with how he normally sleeps. It seemed to me that this was one of his best! Very little snoring and, seemingly, very few episodes of his breathing stopping during the night. Apparently, I was wrong. They called us a few days later to say that he has severe obstructive apnea and had 48 episodes of his Oxygen saturation dropping per hour. Surgery was moved forward and we head into the hospital tomorrow. We expect our stay to be at least a week.

I'm not sure if news like this will get easier over time. We had been feeling that things were going very well and had started to relax a little bit. Maybe we let our guard down but, for me, getting the news that this disease was still progressing was very hard...like reality was setting in again and I wasn't ready for it. I just want everything to be fine, perfect, for our son and it's moments like this that remind us how difficult it will continue to be as we fight to save our son. I've been trying to remember what my friend told me during our last crisis - "Everything always works out in the end. And if it doesn't, then it's not the end."

But for some reason, I'm more nervous about this surgery than I have been about any of the other ones. Perhaps it's because I know that his airway is in such poor condition and that him being put to sleep will be a lot of stress on his body, or perhaps it's because I've had a bit longer to wait before the surgery actually takes place. Either way, I'm nervous and just want Tuesday to come and go without incident. After that, all hopes are that his hearing will improve with the tubes in, and that his breathing will normalize with his tonsils and adenoids out.

Anyhow, we've decided to head out to the John Mayer concert in Toronto on Monday night to celebrate my birthday and to give Isaac a fun experience before his week in the hospital. John Mayer is Isaac's FAVOURITE singer and, lately, everything he's been doing has been John Mayer related. As I type away, he and Gabriel are dancing around and giving their own John Mayer concert, watching the new Mayer DVD as they do so. The picture to the left is Isaac having his "John Mayer Picnic" while he eats his dinner (I know...dinner in front of the TV...sorry!) But he couldn't tear himself away from the DVD in order to eat supper last night, so we all decided to camp out and watch together. Isaac and Gabriel danced and sung all the songs. It was a precious moment, and one I'm glad we all shared as a family.

I've been trying to arrange a Meet and Greet for Isaac, unfortunately without much success. But seeing Mayer on stage will be exciting for him and will hopefully start our week off on a good note. Below is a video that Isaac recorded for John Mayer while we were getting ready for the sleep study. You never know who's watching!

Not sure when we'll get a chance to update again, but we'll try sooner rather than later.

Best,

The Isaac Foundation

RUN FOR ISAAC! An Incredible Success

Hi Everyone!

Wow, it's been a very busy few weeks for us. Things got off to a great start in Ottawa, with us setting up our booth for the Pfizer Health and Fitness Expo. This Expo is an incredible experience to be involved with. Close to 30,000 people travel through the expo, with most of the traffic taking place on Friday night and all day Saturday. It gave us a great opportunity to meet people, talk about Isaac, his disease, and our hope for a cure. It was also nice to have a location for our running team to meet at, drop off pledges, and receive their running shirt.

This is the second year that we have been a part of the Expo, and while I'm there, I'm always hesitant to decide if it's worthwhile or not. Giving up all that time to stand around is difficult, but by the time Saturday evening had rolled around, I was sure that the time and effort was worth it. The people we talked to were so supportive of our search for a cure. We signed up more runners for next year's event, and we were able to spread awareness of this disease to large amounts of people. But most importantly for me, it kept the whole idea of The Isaac Foundation at the forefront of my life.

When you are immersed in something, it's easy to forget the true goal that you are seeking to achieve; it's easy for everything to simply become a process, or an event, or about the bottom line. Speaking with the people that stopped by my booth, the parents, the grandparents, the newlyweds, and the expecting mothers, I was reminded that the whole reason I was there was for my son. I was reminded how personal and how close The Isaac Foundation is to my heart, how important the time I was putting in is if I'm going to help him beat this disease. I felt a true sense of appreciation to my visitors as we shared laughter and tears, all within the span of, at most, 5 minutes.

It was this reinvigoration that got me through the rest of the weekend. While the Expo is a drain emotionally, I still hadn't started on what would drain me physically! Ellen and I had been planning on running the 1/2 marathon together, which we also did last year. But the week before, a group of my grade 8 students decided that they wanted to run the race as well. So I agreed to organize a ride for them (thank you Brenda!) and have them join me at the race. I also agreed to run the 5km with them, which would mean I'd be running the 5 km and the 1/2 marathon, all in the space of 16 hours!

The kids came up and had a great race. As did the entire team that we were blessed to have take part in our event. And everyone participated in the event for different reasons, but they all had the same goal - helping to find a cure for Isaac. Isaac's Great-Grandmother, a young 88 year's old, came out and walked the 5km event with other family members. Isaac's grandparrents, his Nanny and his Poppa, walked the 1/2 marathon, and his Aunt, Uncle, and cousins all ran in a race as well.

I was also fortunate to have a large team come down from The Limestone District School Board in Kingston to support us. Not only did this group include my grade 8 students, it included teachers from the board as well. It felt so great to have their support! And one teacher, Jean Paquin, even qualified for the Boston Marathon with her time!!

One of the runners that truly touched me was Sarah. A few months prior to the run, Isaac had such a terrible ear-infection that we had to get him to the hospital in the middle of the night. We rolled in at 3:00 a.m., Isaac being his happy-old-self, me being the basket-case, worry-wart that I am. Sarah was the person checking patient's in that night, and Isaac and her bonded immediately. We left in short order and headed back to bed. A few days later we checked Isaac's guestbook and found the following entry:

"I was working at CHEO on the morning of Saturday December 8th. I work in the Registration Booth in the emergency dept.Issac was such a ray of sunshine in my day. It was my 3rd overnight shift and I was extremely tired!!! He has a sweet little smile and a great personality. You must be sooo proud of Isaac. Such a brave little boy. I would like to participate in some fundraising!! Good luck to the whole family."

Flash forward to April and we received Sarah's registration to be a part of our team. Like everyone else, she worked hard, trained, gathered pledges, took time from work and took some time from her busy schedule to support us.

We truly appreciate everyone for their dedication to helping us find a cure. In total, we raised close to $9,000 at the Ottawa Race Weekend. But just as importantly, we met some great people, advocated for our son, and got closer to the cure we are seeking.

Best,

The Isaac Foundation

Busy Times are Good Times (I think...)

Hi All,

Sorry it has taken so long for us to send an update, things have been crazy!

Although this will probably be a brief update, I'll do what I can to update you on how things are going.

First off, Isaac is doing amazingly well! We couldn't be happier with his progress since our last update in November, which seems so long ago now. At that time, we made the difficult decision to avoid putting Isaac in a back brace for 23 hours a day for the next 14 years. While it was hard to choose between what was being said by doctors was best for Isaac and his quality of life, we're thrilled that we made the decision we made.

Isaac had his 6 month update a few weeks ago and it's been discovered that his back is stable and, in fact, getting a bit better. As well, his heart continues to be stable, his eyes have not worsened, and his joints appear less stiff. All wonderful news for us!

We are in the midst of planning our Celebrity Golf Tournament and our RUN FOR ISAAC! event at the National Capital Race. I'll be sure to send an update after our team takes part in the event this weekend.

Kids are just walking through the door from a long day at Sick Kids' so must go!

Warmest,

The Isaac Foundation