A few days ago, we received an email from a family in the US. Unfortunately, their son Holden has just recently been diagnosed with MPS VI. Holden is Isaac's age and will begin ERT very soon, which is a bright light for the family. They also have two other children.
We started The Isaac Foundation in order to fund innovative research project that aim to cure the disease, but we also wanted to bring affected children and families together. This is our first real contact with another family that is going through the same heart-wrenching ordeal that we are. I hope that our experience can help them during this tough time.
We fully remember the early weeks after Isaac's diagnosis...What an awful moment in our lives. Perhaps, as the Foundation grows, we can work to connect all families affected with this terrible disease and all work towards finding a cure. It will happen in Isaac's lifetime; I'm sure of this.
Please stop by Holden's website at www.caringbridge.com/visit/holdenguilfoyle and leave them a message of hope for their son and their family.
We also have friends from BC coming for a visit in early November. They have a child that has been diagnosed with MPS II and are wonderful people. Their son, Trey, and Isaac hit it off very well at the MPS Conference that we attended in Collingwood.
On another note, a very touching article about Isaac and the Foundation will appear in the next edition of Kingston Life Magazine. I'll make sure an online version is available, once the story appears. On the ERT front, Isaac's latest measurements have shown that he's grown an inch since treatment began 7 weeks ago! He hasn't grown in the past 8 months and now he's up over an inch already. He has his hernia repaired on November 16th. His breathing is quieter, his skin is softer, his hair is softer, and he appears to be moving around a lot better. Incredible!
Finally, we had a meeting with Susan Henry and Janet Grace, real estate agents for Royal Lepage in Kingston, Ontario. They would like to help us find a cure for Isaac, Holden, and others affected with this disease and have decided to donate a percentage of their commission to The Isaac Foundation. They very generous and thoughtful people. A link to their site can be found with the other links on the right. Please leave us any comments you can. And don't forget to drop by Holden's site.
- The Isaac Foundation