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