Family run for Royal Manchester Children’s Hospital and the little boy with the Angel’s smile
Three years to the day since his little boy was diagnosed with a rare genetic syndrome, Bolton resident Heath Taylor will take on the Great North Run in aid of Royal Manchester Children’s Hospital (RMCH).
Heath’s son, four-year old Rhys Taylor, was born with Angelman Syndrome, a rare genetic disorder which occurs in only one out of 25,000 births world-wide. Characteristics of the disorder include a severe delay in development, the inability to speak, seizures and problems with walking and balance. Individuals with Angelman Syndrome will require life-long care.
Diagnosed at 15 months by Consultant Paediatrician Dr Dan Hindley and Professor Jill Clayton Smith, Consultant Clinical Geneticist at Royal Manchester Children’s Hospital, Rhys also suffered greatly from severe reflux, making it extremely difficult for him to keep food down and put on weight. When a dairy-free diet and a variety of medicines failed to improve the condition, Rhys underwent surgery at RMCH and has since made great progress and a full recovery.
Now Heath is taking on the grueling half-marathon, which takes place on 15th September in Newcastle, to raise funds to support the work of the hospital which continues to treat his son at a specialist Angelman Syndrome clinic. He says:
“I cannot praise the team at RMCH enough for the way in which they have treated and supported Rhys. Whilst he has so many more hurdles to overcome throughout his life, undergoing the surgery on his reflux issue has made a huge difference to his health and well-being. We are so grateful to Mr Khalil, the surgeon who operated on Rhys, and to all the staff at RMCH for what they have done and continue to do for our little boy.”
To sponsor Heath, please visit http://www.justgiving.com/Heath-Taylor
Sherri-Lee Taylor, Rhys’ mum is also taking part in the Great North Run, raising funds to provide specialist equipment to assist Rhys in his daily life. She says:
“One of the most striking characteristics of Angelman Syndrome is that sufferers laugh often and seem very happy all the time and that is just how Rhys is to us – an affectionate, joyful little boy who brings a smile to everyone who meets him.”
To read more about Rhys’ story, please visit www.4ourangel.org.uk