We welcomed Clark and Dudley into the world in March 2016. We noticed at 5 months old that Clark wasn't opening or using his right hand. Our doctors vaguely mentioned “developmental delay”, but to just “wait and see”. However I had read that a baby with such an obvious hand preference was a red flag - we knew something wasn’t right and pushed for an MRI. The MRI scan (at 8 months old) revealed a rare 4cm porencephalic cyst (cavity) in his brain, confirming a diagnosis of hemiplegia cerebral palsy. We now know is that he suffered a grade IV brain haemorrhage (one of the most severe types of stroke) around the time of birth; apparently just “bad luck”.

We were again told to go home and wait and see. We were told to stop asking questions about why it happened and possible treatments; that nothing would change things. We were told to be thankful that he wasn’t in a vegetative state considering the extent of his brain injury. We were told he would “probably” walk but that they couldn’t say how well. We were told his right hand would be nothing more than a “helper” hand at best. It was an emotional time.

What we weren’t told about was all the therapies and support groups that are out there. We refused to "wait and see", and we believe that early intervention can, and already has, helped Clark.

We were particularly excited about Constraint-Induced Movement Therapy (CIMT) and felt it was Clark's best shot at gaining any level of function of his right side. It's relatively new, and not available on the NHS. There is a centre in the UK, but would cost £9k. We searched further afield and learnt about a clinical trial currently happening in Virginia, US. The physios there are experts and include people who have worked on it since the foundation of the therapy. The idea is to constrain the unaffected side to encourage use of the weak side. It's already proven in adult stroke patients, and this is the first study on infants – the results so far show great things, given the 'neuroplasticity' of young brains and the ability to rewire. The trial is free being for medical research but requires several flights.

We crowdfunded just before their first birthday in March 2016 to raise money for the flights; we got accepted onto the trial (the only people from the UK!), and we flew out in September. We spent 5 weeks learning from the truly wonderful people at Virginia Tech Carilion in neurorehabilitation research. Our therapist, Dory, came to our room every morning at 8am and worked with Clark solidly for three hours. We achieved his first steps; his first attempt at pincer grasp and isolating his pointer finger, and so many other firsts. He increased his ability to reach, to turn his hand, to assist with dressing, and generally increased awareness and ability of his right side to the point where it blew our expectations out of the water. Before we went, he would rarely attempt to use his hand and only when we constantly prompted him to. Now we find him not only spontaneously trying to pick up toys with it, but succeeding.

So, we will be doing more intensive therapy with Clark whist he’s young. We are aiming to go back to America in May. We set up “ClarkFest” last month, which was a charity gig and raffle and raised an incredible amount of money. But we'll always need more; we'll always be fundraising for his next round of therapy; we’ll do as much as we can whilst he’s young, whilst his “window” of optimum neuroplasticity is open. We don't know what the future holds for Clark, but we do know that there are so many possibilities; so many exciting therapies to trial and investigate further, and so much room for change.