Joshua & Jacob

For those you who don't know Joshua and Jacob are the 2 boys of Ron and Jennifer Burt. Joshua is 9 and Jacob is 7.
Friends and Family, On June 8th, 2004 we were diagnosed with a illness called Mucopolysaccharidoses II aka Hunters Syndrome, is caused by lack of the enzyme iduronate sulfatase. Hunter syndrome has two clinical subtypes which is severe and mild children that have mild can live until 60yrs old, Severe you olny have 10-15yrs. We have the severe. And is the only one of the mucopolysaccharidoses in which the mother alone can pass the defective gene to a son. The incidence of Hunter syndrome is estimated to be one in every 100,000 to 150,000 male births. Ron and I want to invite you to feel free to post anything that you would like in our guestbook for the boys.

Journal

Monday, October 6, 2008 10:44 PM CDT

We had an amazing weekend... it was relaxing... we played video games, Jake had soccer on fridaywhich it down poured halfway through, bowling on saturday, and on sunday we went to the park and took pictures. We were busy kids! How was your weekend?

Today(Monday) we had treatment... It was went by quick which was good cause we were all restless and bored.
Back to school tomorrow for Jake....

We are headed to Portland for our 6 month check in with all the Dr's in 2 weeks. I can't believe that the boy's have been on ERT for 2 years. Time flys by. And more than that I can't believe that it has been 4 years since they were dx. It seems like yesterday. But we made it through even though I thought that we would never make it through this hard time we were faced with. Our whole family is amzing! Thank you to each and everyone of you that have been there through the years! You will never really know how much we appericate it!

Love you all,

The Whole Family!

Read Journal History

Hospital Information:

Home
P.O. Box 1395
Walla Walla, WA 99362

Links:

E-mail Author: J_Burt9800@yahoo.com

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