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MY son was recently diagnosed with Hypomylination of the basal ganglia and cerebellum. Does anyone have any info on this rare leukodystrophy?
MY son was recently diagnosed with Hypomylination of the basal ganglia and cerebellum. Does anyone have any info on this rare leukodystrophy?
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HI , this is JohnPauls mom Amy, , I just wanted you to know that you and your family are in my prayers....
How is Joshy? Give him a kiss and hug from us.
xoxoxo
Joshy is doing very well, he is excited about going back to school. He has an aide with him all day long and last year, first grade, he did well. How old is Johnpaul? How is he doing? My family and I pray for you all too. With God all things are possible!!
Hi My son Gabriel is 2 and undiagnosed. He is severely developmentally delayed with several other problems. All relating to his brain. The doctors believe he has an unknown leukodystrophy. I lost a son in 2004 at the age of 25 months due to pnemonia complications (he was just as disabled as Gabe is-maybe a little worse) Anyway i have been trying to do research on my own. What exactly is hypomyelination atrophy of the basal ganglia and cerebellum?
God bless!!
Sincerely,
Veronica Wallace
mommy to Angel Hunter Cole 11/23/2002-12/24/2004
www.hunter-wallace.virtual-memorials.com
and Gabriel Chase 6/23/2006
www.caringbridge.org/visit/gabrielwallace
I don't exactly know what it is, I do know that it is progressive and there is no cure. I am so sorry about your son, I can't imagine how your heart must have broke and now to go through more with Gabriel. I know God is with you and will help you through this. I pray you will get the answers you are looking for. Has Gabriel had any MRI's? that is how they diagnosed Josh. They had to wait a ayear and get an MRI and then wait another year to confirm it. It was so frustrating not knowing, but now I know and there is nothing I can to stop it from getting worse, except pray. GOD BLESS YOU, Joshy'smom-Patty
Hello! I have just found this wonderful site and group and feel a connection already. I have a 24 year old 'beautiful' daughter who has been diagnosed with so many things over the years. Finally it has come down to H-ABC disease. This is certainly an emotional rollercoaster ride for Jenna and our entire family ... I know you will understand. I have found out as much as possible about this genetic disorder and would love to be able to talk with you about this. Whew! So good to find all of you.
(PS Today is a difficult day ... we had to make the decision for our Jenna to start process of getting her a G-Tube for feeding ... :( ) Warmly, Lois
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