William’s mum tells us about the experiences of her family and how Cerebra have helped.
“William was born very premature at just 27 weeks and weighing only 1 lb 3 oz at St George’s Hospital, London. William had to be delivered by emergency C-section after I developed pre-eclampsia and HELLP syndrome. He was rushed to the neonatal unit, where he stayed for four months until he was stable enough to be transferred to his local hospital in Yorkshire for a further four months. He had a very stormy ride on the neo-natal unit, needing lengthy ventilation and suffering from liver problems, feeding issues, many infections and epilepsy.
After 8 months, with the help of amazing consultants, doctors and nurses, he finally arrived home solely tube fed and on constant oxygen. Only 26 hours later he was rushed back to his local hospital and transferred to Sheffield paediatric intensive care unit (PICU) in respiratory distress. Put on an oscillator ventilator with nitric oxide and very unstable the consultants arranged for him to be transported to Leicester and put on life support. Fortunately he improved on the journey down, escaping the machine. William spent a further month in Sheffield receiving the best care, being weaned off the ventilator and gradually getting well enough to come home. William had a further three months in and out of hospital unwell with viruses and feeding issues.
In October 2012 he was rushed to Sheffield PICU after going into respiratory failure due to aspiration pneumonia. The staff on the PICU did all they could for William for almost two days, but couldn’t stabilise him. Rushed to Newcastle Freeman hospital he was put on an ECMO (extracorporeal membrane oxygenation) machine and we were told to prepare for the worst.
However, as always William had other ideas. He managed to come off the machine after six days, and be transferred to Sheffield again. Once again, the staff were fantastic, and William received the best possible care and was sent home.
Since October 2012 William has had many admissions to Sheffield hospital due to illnesses, surgery and his epilepsy. A bleed on the brain, thought to have happened before he was born, resulted in a static brain injury that will affect his development as he grows. He suffers with epilepsy, is fed via a gastric tube and is severely globally delayed and visually impaired. Despite his problems he has exceeded all our expectations and is now crawling and pulling up to furniture.
Because of how vulnerable his problems make him he has had to stay indoors for much of the winter, so many days are spent in his playroom with sensory equipment. We discovered Cerebra on a Facebook support group for parents with children with additional needs. He loves bike rides and being outside, so we applied for a grant for a specialist bike just for him. As well as many walks and bike rides he loves feeding the ducks.
William is a true fighter. A gorgeous, content and loved little boy.”
William is just one of many children who have been helped by Cerebra. We can only keep providing help, through direct support as well as through funding vital research, with your support. Check out our fundraising pages to find out how you can make a positive difference today.