Roki has had a tough first two years of his life, tougher than most of us will ever have to endure in our whole lifetime. At six months of age we bundled Roki onto a long haul flight to India, after all, his prognosis was so bleak that we felt there was nothing to lose and everything to gain. Roki’s diagnosis after lack of oxygen at birth for more than forty minutes, which he survived, was quadriplegic cerebral palsy which plainly means he is stuck in a body that he cannot use or move at all.
As a family we embarked on what seemed an impossible journey to cure our son. Looking back now after three long trips to India, the last being ten weeks long, we can say that we have never seen our boy so well. His uncontrollable painful muscle spasms have gone, his body tone has changed from being very spastic to very relaxed, he can move his arms and legs, he can lift his head and hold it a little, he can now swallow well and continues to eat bigger amounts, his eye sight has improved so much that he has learnt to read, yes, read, his hearing has improved and his vocal sounds are longer and more meaningful. Roki has had six brain scans done during and after each stem cell treatment. The improvements are huge and we know that the stem cells have repaired brain cells and neurones.
We now face the challenging task to reactivate certain areas of his brain, the new brain cells need to be taught what to do. We need to create neurological organisation in his brain, almost like making the neurones ‘stand in line’ like a group of school children. The only way to do is through a range of stimulation activities done frequently and with intensity, currently we are doing 135 activities a day, seven days a week, eight hours a day. Roki is on an intensive home treatment program under guidance of the Institute for the Achievement of Human Potential in Philadelphia. We plan to return to the Institute every six months where they evaluate Roki’s neurological growth rate and teach us new methods on how to activate those neurones. It is the only place in the world of its kind.
All of this means that we need to continue our fundraising and we have been so fortunate in all the support from the community. Roki has come so far and it would’ve been impossible if not for the generosity of everyone who has crossed his path. Currently we need to raise $30k before March next year, this is to cover costs of the last stem cell treatment as well as our next trip to Philadelphia which cost around $20k.
Currently we have a team in the annual Pub2Pub run. Last year Team Run4Roki came second in fundraising, we also had the second biggest team. This year we want to gather the biggest team ever and take Team Run4Roki to the top. After all, Roki aims high every day, he learnt to read within 7 weeks before the age of two.
Nobody can tell us that there is nothing to be done about a brain injury. There is, it’s called a better life, for our boy Roki and perhaps many others like him.