Opportunity ..

First Day of Leukodystrophy Conference-Opportunity of a life time. We had an exhausting first day . We met families with same and different kind of leukodystrophy's here. Many of this conditions have no cure or medications.
I prepared for this week with every possible copy of Sammy's medical history. All 3 MRI scans copies was given for evaluation as soon as we arrived.At dinner time little did I know I was sitting next to 'Legendary' Marjo van der Knapp,MD.,PhD-expert in MRI Characteristics of Known Leukodystrophies. She promised to review all 3 MRI tomorrow.If you are not shy you can meet all the important doctors at dinner.It's pretty much 'you snooze-you looze'.I intended to meet several Doctors today ,but met only few from my list.Dont worry,I will find them tomorrow! We also find out that for after Bone Marrow transplant patients MRI has different characteristics and should be interpreted by Doctor that is familiar with after transplant MRI patients.
It's a wish come true ,we did not had to explain anything-instead we get to learn something about Sammy's rare condition , make connections and get connected to network.
One massage stand out loud and clear- in patients with X- linked child cerebral form of Adrenoleukodystrophy -Transplant is one and only hope to stop it. What are the chances?
What is cause onsetting disorder? Why One boy from same family is symptomatic and disorder takes his life and his brother with the same tests is OK and not showing any problems?
This and million other questions are not answered.This is a rare opportunity to meet leading Doctors and tell them your story-show them picture of our beautiful boy and reassure that their hard work is very much appreciated and this families desperately waiting for cure and to save their loved ones.
XOXO ,MOM