Robert Harrison Doebler

Welcome to Robert`s Web Site. It has been provided to keep people updated about Robert. Robert has X-Linked Hyper IGM and is undergoing a Bone Marrow Transplant. His donor is his brother Patrick. Transplant day was January 23, 2003.

Journal

Monday, August 6, 2007 9:10 PM CDT

Its been a long time since I've written in. Robert is looking good and been very healthy this last year. His last bad cold was Dec 06. He had a great year at school. His teachers Devon, Burke and Mel took great care of him and he had a lot of fun. We will start back again in a couple of weeks and will be in the same team, just shifting around a little bit.
His last MRI did show more iron in his brain which got me researching. The best thing I could come up with was NBIA
(neurodegeneration with brain iron accumulation) I sent all MRIs to a specialist in Oregon and she thinks this is what he has. THere are 2 types identified now and of course his is the type the test is not developed for yet. They are working on it. My neurologist has researched also and agrees with me. It gets very complicated but one theory is there was a large deletion on chromosome 20 where the immune deficiency and the NBIA are both located.
Also found a drug, not approved by the FDA deferiprone that is said to cross the blood brain barrier and can remove iron. I am in touch with a doctor in Las Vegas who is getting ready to start a trial study and is going to
try and include Robert. Hopefully this will be our Miracle! Everyone else is doing great, getting older, including me. Have been to the beach, visiting with family and swimming all summer.
Will be going soon for a 4 year check, we are way overdue. I have just been putting it off.
I will try to keep up alittle more than once a year.
Maria

Look at past journal entries

Hospital Information:

Patient Room: Sharing with Mom and Dad

Robert Doebler
Home, 6107 Trotter Ridge Road
Summerfield, NC 27358
336-643-0323

Email address  : telrem@earthlink.net

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