Elizabeth Witmer - Politician, Mom, Life-Changer

Well, Isaac's treatment this week was quite an adventure! It all began when Ellen took Gabriel into the doctor for his chicken pox vaccination on Monday. The doctor looked at Ellen and said that Gabriel currently had the chicken pox and he couldn't get the vaccine. Who knew that he had the chicken pox? In fact, he had 5 spots and they had just shown up that day.

So, this immediately posed a problem for Isaac's treatment. Ellen usually takes Isaac and Gabriel to the hospital with her mom. This way, Gabriel can still be with mom and Ellen and Isaac get a chance help while they are at the hospital. Plus, Gabe is still breastfed and won't take a bottle of EBM. With chicken pox, Gabe couldn't come to the hospital, which meant that I had to take the day off to take Isaac to treatment. And it's hard to take time off.

Anyhow, treatment went really well and I really enjoyed my time with Isaac at the hospital. Even when Ellen called me every 1/2 hour to give me a tip on how to do things while we were there! I made sure to take a lot of photos so I could document the complete day of treatment for my next blog update.

The best thing about the day, however, was the visit from Elizabeth Witmer (pictured with Isaac above) and her assistant, Erin Greatrix. Elizabeth is the MPP that really made treatment a reality for Isaac. She's an incredibly caring and compassionate person and truly believed in Isaac and our hope to get provincial funding for treatment. When Erin told her about Isaac, she agreed to meet with me almost immediately. She fully understood that we were running out of time to get Isaac started on treatment and moved immediately to confront the government about the lack of funding available to bring hope to Isaac.

While the Liberals did nothing to show their support for Isaac, and while the Liberals showed no remorse for our family situation, Elizabeth came to the rescue. She continued to push for our cause and brought Isaac up in the Legislature twice. And if we didn't want her to say something publicly about Isaac, she respected our wishes. And when we sent reporters her way, she made time for them over and over again.

Elizabeth showed how incredible she is is by taking the time to visit Isaac during one of his treatments. She cared how things were going. She immediately noticed all the changes in Isaac and recognized how important it was to see the how wonderful and life-saving this treatment truly is for Isaac. Moreso, she wanted to show that she appreciated the efforts that our family put towards saving our son. This is more than what George Smitherman has done and more than what our local MPP, Lou Rinaldi (another Liberal, BTW) has done.

Our family is indebted to Elizabeth for what she has done for us. She's changed our lives immeasurably and has given Isaac hope for the future. That's all any parent can ask for - Hope for their children's future. Although we can never repay her for her kindness and support, I hope that she'll be available for us to send her a card when Isaac graduates from highschool. And I hope she'll be around for us to send her Isaac's wedding photo, and the announcement of the birth of his first child. And I truly hope she'll be available to speak at our celebration party when we make the announcement that we've found a cure for this horrible disease. No matter what the future holds, we have one for our son thanks to Elizabeth.

Take Care,
The Isaac Foundation

DVD Now Available on YouTube

We've uploaded our DVD, created by my brother Cameron, to the popular YouTube website. It's also streaming above. Please stop by the site to watch the video. As well, please send the link onto all of your friends and ask them to send it onto their friends. We want to get this video to as many people as possible.

The DVD contains about a 3 minute slideshow of Isaac and our family's photographs and then details information about Isaac, his disease, and our Foundation.

Biomarin, the drug company that I've spoken of that makes the ERT that Isaac receives on a weekly basis, still hasn't seen the DVD. Perhaps they'll watch it while on the site and garner an appreciation of the amount of time and effort and resources it took for us to get their product available and funded in Canada. Perhaps they'll realize how precious the children are that are affected by this terrible disease and they'll work hard to ensure that all children have access to the treatment, regardless of their country of origin or financial assistance status. Or perhaps, as I expect, they simply don't care unless there is an assurance they'll receive their financial dues.

Take Care,
The Isaac Foundation

Heart Prognosis and A Visit From Some Friends (well...Family)...

Hello All,

We had our appointment at Sick Kids' today to track the heart murmur that's developed in Isaac. We found out that there is some thickening of Isaac's mitral valve and thickening in his aortic valve. Essencially, this is the build-up of GAG's that we've been expecting to take place.

Right now, there is not concern except for the fact that it will need to be watched continually for changes in the condition. As well, he'll have to have some heart meds before surgeries. The cardiology said that it's not severe right now but it's also not trivial.

The other minor concern, and something that we'll have to monitor as well, is the finding that the right ventricle chamber of his heart is 10% enlarged. The cardiologist assumes this is taking place because of the back flow into ventricle because of the problem with the mitral valve. If the chamber continues to become enlarged there will be more cause for concern.

Isaac did very well during his echocardiogram. The hospital was thinking that he might need t be sedated because the procedure takes about an hour for a full scan. Due to airway concerns, we decided not to use sedation and Isaac was awesome! He did the whole echo like a trooper and even helped his new friend, "Dr. Carlos." Carlos did a great job with Isaac and got things finished quickly. We were so proud!

The pictures attached are of Isaac's friend, Trey, who happens to be a child affected with MPS II, or Hunter's Syndrome. We met the family at the MPS conference in Collingwood in the summer. They are visiting us after a long and difficult trip to Duke University in North Carolina where they were having tests done that are to determine whether Trey needs a Cord Blood Transplant. They have stopped in to visit us for a few days before they head back to their home in BC.

Trey and Isaac play really well together and they love to spend time together. Trey's parents, Ryan and Deb, are wonderful people as well. We've only spent a few days together in total, but they already feel like close family members. They also have a little boy, Avery, that is Gabriel's age.

Ellen and I can't imagine the difficult times that Ryan and Deb are facing right now. The decision to have a Cord Blood Transplant can't be taken lightly because of the incredible risk involved. Please drop by their website (listed on the right) and send them some support by way of signing their guestbook. It's going to take a lot of hope, determination, and love to beat this disease and they need all the help they can get right now.

Finally, Elizabeth Witmer, our wonderful MPP that has changed the course of Isaac's life, is hoping to stop by to visit Isaac during one of his infusions. We can't wait to see her! She's a tremendous woman, incredibly compassionate and dedicated to her provincial constituents. She's truly made a difference for us and we can't think of how to thank her properly. We'll be sure to upload a photo of her with Isaac once we get to see her again.

Take Care,
The Isaac Foundation

Halloween, An Inspiring Group of Kids, and What Goes Up...

Well, it's been a busy week, to say the least. Isaac and Gabriel spent Halloween at the hospital while Isaac got his treatment done. We made sure that we went out trick-or-treating the night before and visited Nanny and Poppa and Great-Granny and Great-Grandpa. The kids had a great time, and they were both so cute! There was a bit of trick-or-treating done at the hospital as well, which is great for the patients at the hospital. What a wonderful place...

We also heard some great news from our friends in Kansas regarding their son Holden and his quest for ERT. They heard at the end of the week that they do qualify for ERT for Holden and will begin soon. What a relief for the family! We fully remember getting the great news and how anxious we were to start. Please drop by their site (listed with our links on the right) and send them a quick note of support and congratulations.

While we're thrilled that Holden will be getting ERT, it really puts the drug company's (Biomarin) priorities in perspective. The Guifoyle's got their diagnosis and were contacted by the drug company regarding treatment. They also had a case-worker assigned to their family and had help applying for funding. Excellent support from Biomarin, which is exactly what families need when they are going through such a difficult transition in their lives.

Rewind to our diagnosis and the NON-help that Biomarin gave to us. We made contact with the drug company to ask for support in having Naglazyme approved for use in Canada and got no assistance. We pleaded to access the drug at a reduced rate because we were going to bankrupt our family and friends and anyone we could think of. Their cold response was "that would affect our price in Canada." In essence, no help from Biomarin to get the drug approved, no help from Biomarin to try to pay for treatment ourselves, and no assistance in our fight with the provincial government to get treatment funded for Isaac. In our view, this is completely wrong and truly sheds light on Biomarin's goals -the bottom line. In a country where there is a reasonable assurance that they will receive funding for providing this ridiculously expensive treatment for affected children, they will provide as much assistance and support as needed. In Canada, where there is no application pending for the drug to be approved and there is no assurance that funding will be forthcoming by governments, officials at the drug company disappear. They don't care about families and their struggles unless they are going to be paid for providing treatment. Sickening, truly sickening. What Biomarin should be doing is assisting all families and all affected children. Set up a compassionate program for those affected and where funding isn't going to be forthcoming. At a million bucks per child per year, they're going to be making enough money. Perhaps they can make their money AND feel good about the children they are helping. Lets not let these kids die because of financial considerations.

Onto other matters and what goes up, must come down. Things have been going so well with treatment and we're seeing a lot of changes in Isaac. However, got a bit of troubling news recently that reminds us that we're still fighting a progressive disease and we have to find a cure. While at the hospital last week, Dr. Clarke discovered a prominent heart murmur in Isaac and noticed that his heart was beating fairly fast. We quickly went for a chest X-ray and an ECG. We see a cardiologist on Wednesday and have an Ecocardiogram scheduled for earlier in the day. Hopefully this will prove to be a non-issue. But it again proves how incredible The Hospital for Sick Children is. They got Isaac in for tests ASAP with very little waiting period. We see a specialist a week after the initial concern was discovered. We know of and read about many families that have to wait a lot longer to deal with these issues. We're lucky to have Sick Kids' as our primary care center for Isaac.

The Isaac Foundation would also like to thank a group of grade 6 girls at Winston Churchill Public School in Kingston, Ontario. Last year, the girls were assigned a project that asked them to find a way to make the world a better place. They choose The Isaac Foundation as their main focus and worked hard to raise money to help us find a cure. They met every Friday to go over ideas and at the end of the school year, they presented the Foundation with a cheque for $500! This September, the girls approached me to tell me that they are still meeting weekly and they are still determined to help us find a cure for Isaac and other children affected with this disease. On Halloween, they went out canvassing in support of the Foundation and we want to thank them for their continued support. It's amazing how truly empathetic these kids are towards Isaac and his battle!

Take Care,
The Isaac Foundation