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

Tuesday, October 28, 2008 12:18 AM CDT

Well we are back from all of our appoinments... It went very well, except that we all got a cold!

Josh and Jake doing great on the treatments. There has been no build up on their hearts which is wonderful news. Jake is probably going to have another set of tubes put in. Then in six months we will retest the hearing and see if he still will need hearing aids. With all the ear infections that he had when he was younger it has left alot of scaring which causes hearing loss. Jake has started coming up on to his toes when walking so the Nuerologist is going to talk with Shriners to see what opitions there are. But other than that they are very impressed that he is completely potty trained, can ride a motorcycle, plays soccer, baseball, and any other sport we can get him into. Josh is doing good, we have made some adjustments to the meds he takes and he has started saying some words that he used to say. Also the Nuerologist is going to talk to Shriners about Josh's legs. He would like to do surgery on one at a time but would like to have their opinion on recovery and if he will even try to walk again after the surgery.

We had a great time with Aunt Nancy and the whole family in Portland. Hope you all have a wonderful Halloween, Until next time,

With love,
The Burt Family....

Hospital Information:

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

Links:

E-mail Author: J_Burt9800@yahoo.com

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