Paediatric MS - Sam's Story, an update

Dalfampridine, or Ampyra, is a potassium channel blocker that is shown to improve visual function, motor skills and relieve fatigue in MS patients.

Paediatric MS - Sam's Story, an update

Postby MSUK » Mon Jun 06, 2011 5:23 am


Our darling Sam was diagnosed with MS at 5 years old, Sam is now 7, he will be 8 in October.

Sam has made his Dad and myself smile again, if you told us that 2 years ago I would never ever have believed it. But Sam has not had a clinical relapse since August 2009, we've had lots of scares and tears but I've learnt MS is so so wierd, you can havesymptoms for a hour/day or a week but steriods are not always needed. I've learned a lot since Sam was diagnosed.

His neurologist Dr Kamath Tallur is beyond amazing, we see him every 6 months and he's a phone call away if we are worried at all about Sam. We have a new "normal" life now,3 times a week I inject Sam with Rebif, he cries everytime, so do I, as I get Sam to bite my finger as I inject so we are both in pain, his sister Lucy who is 9 cuddles Sam as I inject him.

Sam gets tired walking short distances and his memory is just awful, but we know it's his MS so its beyond our control. He has always had a bad memory and got tired walking so maybe the MS was there before he fell really ill in March 09, who knows?

I have recieved 1000's of emails over the last 2 years about Sam thanks to MSRC printing Sam's Story, the kind wishes and words are never forgotten but what struck me was how many adults wrote telling me THEY had symptoms looking back into their childhood but there were no MRI's nor the tests back then, so maybe childhood MS has been around longer than we all think........

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Postby coach » Mon Jun 06, 2011 9:16 am

Such a cute boy and I am sorry he has such an awful disease. Sending prayers and hugs Sam's way.
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