Hi Everyone,
Well, we've had three treatments so far and things are going very well. Isaac tolerates getting hooked up to his port extremely well and spends his time watching DVD's or in the playroom during the 5 hour process. The nurses on the floor are great!
We're already seeing changes! His internal organs have shrunk down and his stomach isn't as distended at night as it used to be. I think he is breathing quieter at night, although Ellen isn't so sure. Yesterday, long time friends of ours commented that his features seemed to be less course. How incredible!
We are indebted to Elizabeth Witmer for her unrelenting efforts to get Isaac on this treatment. It has really restored our faith in politicians, knowing that they truly do work hard to represent their provincial constituents. She is a wonderful person. We're not sure how to thank her fully for the way she has changed our son's life.
Our issues with the IGT department at Sick Kids' has been looked into by the patient advocate department at the hospital. Not sure what will come of it but we are hoping other families won't have to experience the difficulties that we had to. Families have more to worry about with their sick children and shouldn't have to deal with problems with their hospital.
Keep watching for Isaac's updates and news about upcoming Foundation events. We're fortunate to have many school groups doing projects on The Isaac Foundation. We're thrilled that Isaac has had such a positive impact on these students lives and they want to help spread the word about the Foundation and our quest for a cure. Every bit will help!
On that end, we are getting close to being able to provide our first research grant into MPS VI research. We're talking with Dr. Clarke about where the innovative research is being done and what ideas look most promising for our son and others affected with this disease.
If you have any ideas for future Foundation events or would like to host an event, do let us know. We're happy to help with anything...
Take Care,
The Isaac Foundation
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