This is Robyn, our sassy 9 year old daughter from Macclesfield who suffered severe brain damage. Just4Children are raise funds to help improve her motor skills and give Robyn a more independent life.
Robyn was born at 37 weeks via emergency caesarean section after reduced movements. She had suffered an Hypoxic Ischemic Encephalopathy (HIE) – an event where there is lack of oxygen to the brain. An MRI confirmed Robyn had suffered severe brain damage as a result. She was not expected to survive. However, they didn’t take into account that she was a real fighter. In fact the paediatrician who helped save her said she had been born with a Rolls Royce engine!
Robyn has quadriplegic dystonic cerebral palsy GMFCS level 5, meaning she is completely dependent on others for her care. She is non mobile and relies on a specialist supportive wheelchair at all times. Robyn has a gastrostomy which is a device in her tummy giving direct access to give her meds and her blended food directly into her stomach. She is non verbal but this does not mean she has nothing to say. Far from it, and Robyn works incredibly hard every day to get her opinions across. We communicate on a basic level using yes and no questions where she can gesture yes (big smiles or a leg kick or sometimes a verbal sound “yeah”) or a delicate head shake for no. We also use PODD communication and lots of subtle eye gestures from Robyn.
Anyone who knows Robyn, knows that she can be a really cheeky monkey! Her fun personality shines through, she has a huge smile and the most infectious laugh.
However, life is very hard for Robyn and the severity of her disabilities means it’s incredibly difficult to get the right kind of equipment to help her. As wonderful as our NHS is they have very limited funds and over the years we’ve seen support and services being withdrawn at a disturbing rate.
Just4Children are hoping to raise funds for Robyn to provide her with more specialist equipment to help enhance and support her life as best we can. One of the main areas is communication- she is currently working really well trying to push button switches to activate various things – be that a recorded message or a computer game or toy. We would like to expand her ability and give her more of a “voice” by giving her a series of switches. And if enough funds are raised we would like to explore the possibility of an eye gaze type technology where she would be able to use her eyes to control a computer. This would give Robyn the opportunity to enjoy every day activities that other children take for granted.
It has been a hard decision for us to ask for help but we know how much of a difference it will make to improving Robyn’s life. We’re incredibly grateful to everyone who has previously supported Just4Children and those who continue to do so. It really does make a world of difference to Robyn, so thank you.
