Elliot was diagnosed with MPS-1 (Hurler Syndrome) when he was 14 months, received his BMT in Mn. at 20 months old and is now 3 years post transplant!

Journal

June 7th, 2005

I am happy to report that summer has arrived in New England!!! School is coming to an end and we are gearing up for our big trip to Duke University. We decided to start going to Duke after we returned from Florida. The families we met were so pleased with the care and follow-up care they receive from this facility. We started to feel a little lost in Boston. Even though Boston is a wonderful facility, they just don't have the experience with Hurler children that Duke and Mn have. We will be going the week of July 18th. I will post Elliot's schedule at a later date...it is really full!
Elliot has been doing well, aside from lots of behavioral issues. He has started on Meds for Hypothyroidism which seems to be going well. Now that Elliot is 5 we look forward to Kindergarten in the Fall. He will attend full day in an intensive learning classroom setting. Thanks for checking in on the man!

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E-mail Author: krmattheson@verizon.net

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