Harry

Harry, from Nottingham, was born with complex congenital heart disease and underwent two operations at an early age. When he was three, he suffered two cardiac arrests while having a routine bronchoscopy which left him severely brain damaged due to the lack of oxygen.

Parents, Sam and Andrew, are grateful for every day with their son. “He could be with us for six months or it could be years, we just don’t know, Harry decides that.” said Sam.

Harry suffers from Cerebral Palsy, Spasticity, severe Epilepsy and Quadriplegia. He was also fitted with a tracheostomy following several bouts of pneumonia. Harry also has onset Scoliosis and hip Dysplasia, which means he frequently experiences chronic pain.

“When Harry had the cardiac arrests it was incredibly hard, it was just a massive blow to us, we thought he was just going in to hospital to be a day case,” said Sam. “Prior to the brain injury Harry was a very happy, cheeky, nearly three’ year old. Although he’s still happy and smiley, he is unable to express this emotion as much as before.

“He has such a cheeky personality and he strives through. He is a typical lad and loves playing Fortnite and watching Stranger Things. Harry talks by blinking and uses an eye gazer and sometimes he finds cheeky sentences that make everyone laugh.

“We discovered Rainbows when Harry was three” added Sam. “Harry just loves it. Everything that everyone has done at Rainbows is just fantastic. We always see the positive affect his visits have on him. Harry needs care 24/7, he has to have someone to stay awake all night every night with him because of his seizures as well as him being on a ventilator overnight.

“When Harry was little, we stayed with him but now, he goes to Rainbows on his own and it gives the rest of the family time to breathe. It helps us to have a bit of normality where we don’t have to think about hourly medications and ventilators and feeds and pumps and suction.

“At Rainbows we know he is safe, secure and happy and we can call anytime. Rainbows is wonderful.”