At 5 months’ old, we noticed that Clark wasn’t using his right hand. We tried not to compare him to his twin, but we did; and something wasn’t right. We were told to “wait and see”, but we pushed for an MRI. Clark had suffered a grade IV brain hemorrhage, leaving him with a cyst in his brain (see left) and hemiplegic cerebral palsy.
We were told to go home and be thankful he wasn’t more affected. Instead we researched all the interventions that are available outside of the NHS. We pursued a therapy called intensive CIMT (Constraint-Induced Movement Therapy), and found a clinical trial in Virginia, US - he received 3 hours of therapy every day for four weeks - he learnt to transfer items to his right hand, to reach and turn with it, and he took his first steps, at 19 months old.
We went back 6 months later for another month. He made more amazing progress. He can now turn pages of a book; isolate his pointer finger, and adopt a pincer grip.
The more interventions we undertake whilst he is young, the better. Cerebral palsy by definition is not a “progressive” disability - but years of spasticity and tightness will soon enough take its toll in the form of muscle deformities unless we do something about it now.
We are fundraising for:
• more intensive therapies (physio/CIMT/bi-manual)
• surgery in the US which will reduce the spasticity in Clark’s leg
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