Cranky today!
Johnathan is a cranky boy today! No doubt this is exhausting for him and he is not at home!
Today he got his results for comprehension and speech- 4 yr 8 months
His sight is perfect
And he did his swallowing test which was fine
Friday he does:
MRI
high frequency hearing test
Spinal tap
Skin Biopsy
His Doctor said that he is doing so well and it makes this trial participation even more important.
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4 year old Johnathan Spencer was diagnosed with a rare terminal disease Niemann-Pick type C. This blog is the story of our fight to save our baby.
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