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. Metachromatic Leukodystrophy is progressive and there is no cure. Sam received an unrelated umbilical cord stem cell transplant on May 15th at Duke University Hospital to provide him with the enzyme his body has failed to produce. **MLD-101**

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When Sam was 3 we took him to an Orthopedist. He seemed a bit unsteady on his feet. He'd be standing there then suddenly step backwards as if to catch himself from falling. The Dr. x-rayed him, had him walk down the hall, sat him up on the table, moved his legs around and chalked it up to a tight achilles tendon that he'll grow out of.

Fast forward 3 years. Sam was having pain often. You could not hug him to tight. We were unable to lift him up without doing it very gingerly. He was not able to hang on the monkey bars at the playground and required a lot of assistance climbing the ladders. Forget about jumping down from anything. Sam was falling all the time, started walking with his elbow slightly bent and his stance was looking funny. The Dr. redid the xrays, they looked fine, then had him walk down the hall and told us we needed to see a neurologist.

Sam has Metachromatic Leukodystrophy(MLD). MLD is a rare, genetic, degenerative disorder. The prognosis for Sam was dismal and his life expectancy was short. It was just a matter of time before he would loose all control of his muscles and be bedridden. Our only hope for Sam was a stem cell transplant. Sam received an unrelated umbilical cord stem cell transplant on May 15th to halt the progression of this disease. There is no cure at this time for MLD.

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

Please pray for Sam.

Sam's Transplant Journey


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