Priya-Jayne is 4 years old and lives in Havant with her mum and older brother. Priya has cerebral palsy.
My waters ruptured at 27 weeks and I began to show signs of labour. They managed to prevent labour but I became extremely poorly and the decision was made to deliver my baby at 33 weeks 6 days by emergency c-section.
Priya was doing way better than first thought and needed minimal medical intervention. She weighed a tiny 3lb 11oz and spent 5 days in her incubator, but she was doing amazingly well which meant we were both allowed home.
I started noticing the delay in reaching milestones when Priya was 6 months. She was very stiff and arched her back. She didn’t sit or show any signs of wanting to crawl. At 18 months my thoughts were confirmed that Priya was showing all the signs of cerebral palsy and there was a chance that she may never walk.
Covid then hit and we were left with no follow up treatment due to it all being cancelled. But with a lot of hard work and determination Priya finally took her first steps using her nimbo walker at 23 months. She cannot yet stand unaided but she believes that one day she will walk just like brother and mummy.
Unfortunately, the spasticity in Priya’s body makes movements much harder for her and over time could cause more damage to her body also impacting on her mobility.
We have recently been informed that Priya could be approved for potentially life changing spinal surgery on the NHS. The name of this surgery is Selective Dorsal Rhizotomy. The procedure aims to reduce spasticity in the lower limbs.
This surgery is just the beginning. After surgery Priya will have to learn how to use her body without the spasticity. Physiotherapy will be needed for around 2 years to give her the best chance of as much independence as possible. Children that do a lot of therapy get the best results. Which will include 3 hours intense physiotherapy daily for a week at a time.
We are fundraising so we are able to access equipment, rehabilitation and home improvements that will be essential to achieve her dream of walking unaided.
