Olivia is from Oldham in Greater Manchester and was born at 29 weeks weighing 2lb 10oz. She couldn’t wait any longer to enter the world!
After 3 months in neonatal Olivia was finally discharged home. It was the best day of our lives by far!
Olivia didn’t have the best start to life. Every month since being out of neonatal until she was 1 year old she was re-admitted into hospital with Bronchitis and re-current chest infections.
At around 12 months old we started to notice something was not right as Olivia was not meeting her milestones. We raised our concerns with our paediatrician who then put it down to her being so premature and told us to give her time to catch up. But, when Olivia reached 2 things still hadn’t got much better. This is where our journey began when we were referred to physiotherapists and many more health professionals.
Cerebral Palsy was suspected. Olivia had a MRI scan at around 2 and a half which confirmed the uncertainty. Olivia was diagnosed with Periventricular Leukomalacia Brain Damage (PVL). This meant Olivia had Spastic Diplegic Cerebral Palsy or tight muscles in her legs).
Olivia is unable to sit comfortably without pain, crawl or even walk unaided. She has the use of a kaye walker to help her get around but even in this she cannot access it herself.
She is such a bright, happy, bubbly little girl. She has never let anything get in her way. With her determination we know one day it is possible to have Olivia out of her kaye walker and to take some independent steps.
I was advised about a surgery called SDR (selective dorsal rhizotomy) which I instantly knew was the right thing to do for Olivia. At the moment Olivia is not quite ready for the operation. It is a 6 hour operation to cut the sensory nerves in the lower spine. This will allow the muscles to move more freely and allow them to be strengthened by intensive physiotherapy.
Due to the NHS now stopping funding for SDR we will need to raise £50,000 to enable us to pay for pre and post operative physiotherapy, the operation along with equipment.
We hope you can help us make Olivia’s wish to walk come true.