He is the younger brother of Kayla and the absolute light of our lives. We were complete when we had him, a daughter and now a son, a “gentleman’s family”. We were enjoying our lives as a family but little did, we know what lay ahead…
When James was 9 months old our lives took a different turn and we are now on a path/journey we knew nothing about. At this appointment the practitioner noted that James wasn’t meeting his milestones, he wasn’t sitting up, couldn’t crawl properly and couldn’t straighten his legs. Honestly as a mother, I thought he was a typical male and would do things in his own time. Unfortunately, after an MRI our worst fears came through and it was confirmed that our little boy had a brain injury, PVL, white matter, cerebral palsy, spasticity, so many different words. We couldn’t get our head around it, how had we missed this and how could we fix it?
The next few months were a blur as our lives were now full of appointments, physio and OT. Four years on and we struggle on a daily basis to keep our little boy mobile, we are fighting against spasticity and we are losing, it is only a matter of time before James loses his mobility and while the thoughts of a wheelchair scare me, it is the pain that he will have to endure on a daily basis with spasms that upsets me the most.
James has many struggles with his balance and walking. He walks independently but has poor gait and endurance. He wears AFO braces daily on both legs and hates them. They are hard and uncomfortable; they slow him down even more and what is truly heart-breaking is that he cannot keep up with the other children at playtime in the school yard. He asks me everyday if he can leave them off so that he can play with the boys. Things we take for granted like climbing the stairs, buckling our seatbelt and dressing are mountainous tasks for him. He cannot dress fully; socks are impossible as his legs are so tight, he cannot put on his own socks. He falls a lot.
But we have been given hope, a lifeline:
Dr TS Park, the worlds top Neurosurgeon performs a surgery called SDR at St. Louis Children’s Hospital in Missouri. He has operated successfully on over 4,000 patients. We asked him to assess James and he came back to say that James would be an excellent candidate for SDR. The surgery will permanently remove the spasticity and improve his balance and endurance and make life easier for our boy.
However, this all comes at a price. James is provisionally booked for August 2021 and we are asking for your help to raise funds. We need to bring James to America for the surgery and remain there for 4 weeks. He will have muscle lengthening surgery after the SDR and 3 weeks of intense physio after. He will then need ongoing intense physio on his return home to build up his strength.
Please support us to give James the best life he can have. Thank You.
- Marie Clare Stokes
- Dympna Kildea-Raffle Tickets
- Margaret Killeen
- Margaret Lenihan
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