Conor Bailey vs Cerebral Palsy (cb v cp)

Meet Conor, he is 5 years old, Conor was born at 27 weeks weighing just 1lb 11oz, he spent the first months of his life in hospital (110 days to be precise), he was ventilated for 27 days, had a PDA (hole in his heart), bleed on his brain, collapsed lungs and was requiring a lot of support to get him through, including many blood transfusions, lumbar punctures, lots of medication and 24 hour care in the intensive care unit. When Conor was finally due to be discharged from hospital he contracted RSV, which meant a prolonged hospital stay and 13 month oxygen requirement at home after discharge. This is just a brief overlook of Conor’s very early months.

Fast forward 5 years, although the challenges have been on going, Conor is thriving he has beat all the odds that were stacked against him! However he also has cerebral palsy, Cerebral palsy (CP) is a group of disorders that affect a persons ability to move and maintain balance and posture. As a result of this Conor wears AFO’s (splints) he uses a k-walker and wheelchair for longer distances as he can tire easily and often falls over, he also has lots of other specially adapted equipment that he uses to help strengthen his muscles and help him mobilise, alongside CP, Conor has chronic lung disease, and metabolic bone disease. .

Selective Dorsal Rhizotomy (SDR) is a surgical procedure that aims to reduce spasticity in the lower limbs. - this is something that is currently being reviewed for Conor. SDR surgery, works by cutting the nerve rootlets in the spinal canal that are sending abnormal messages to the muscles.

This is a big and intense surgery, however the benefits this could have for Conor’s quality of life massively outweigh the risks.

Prior to this surgery Conor would benefit from extra strengthening and conditioning support which will come at a high cost, the cost is approx £450 for 10 session.

This would include numerous sessions prior to surgery and then further therapy for a long time post op, one 1 hour session per week would be £2250 per year.

Additionally, Conor’s current therapists have recommended a specially adapted tricycle (colt trike) that will help build his strength, however this is an additional cost of £2119. Conor has tried out these trikes and the support for his body and legs is amazing, not to mention the great big smile on his face that he can properly ride “a real a bike!”

This is where you guys come in, we are currently looking to raise £3500, this will help cover some of the cost of the therapy, and the tricycle. If anyone can help with fundraising, whether that be prizes for fundraising, ideas for fundraisers anything would be massively appreciated.

I’m posting this on behalf of my sister Becky, her partner Graham and of course nephew Conor, to try help support them in raising as much as possible to fund what they need to brighten Conors’ future.

Thank you for taking your time to read this post, if you can not help with donations please share this post maybe it will reach someone who can help our little Conor x