Sam Through The Years

The radiologist summation is "Diffuse white matter disease. Suspect metachromatic leukodystrophy." (MLD) Bloodwork was sent to Dr. Weinger's lab at Thomas Jefferson University and MLD has been confirmed. MLD is progressive and there is no cure. Sam will receive an unrelated umbilical cord stem cell transplant on May 15th to halt the progression of this disease. It will take up to a year for the missing enzyme to cross the brain barrier. **MLD-101**

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When Sam was 3 we took him to an Ortho. He seemed a bit unsteady on his feet. He'd be standing there then suddenly step backwards as if to catch himself from falling. Dr. xrayed him, had him walk down the hall sat him up on the table and moved his legs around and chalked it up to a tight achilles tendon that he'll grow out of. Fast forward 3 years-I took him back. Sam was falling all the time, started walking with his elbow slightly bent and his stance was looking funny.... Dr. redid the xrays-they looked fine, then had him walk down the hall and told me we needed to see a neurologist.

Sam seems to have pain often-you cannot hug him to tight, you can't lift him up without doing it very gingerly-he can't hang on the monkey bars at the playground, he requires alot of assitance climbing the ladders and forget about jumping down from anything. He tremors frequently in his hands.

Sam has Metachromatic Leukodystrophy. For more information on this disease click here.

Please pray for Sam.

I have created a website to post updates: Please visit: and scroll down to Journal.

Previous Updates (Click Here)

Please provide us with *any* links you can find with regards to leukodystrophy. I have setup a messageboard for links-Username: links Password: ulinks <CLICK HERE>