A children’s charity has stepped in to help the families of two disabled St Leonards youngsters.
Charity for Kids, which was set up three years ago, bought a new iPad Mini for two-year-old Tommy Murfin, of Marina.
The toddler was born with a condition called 22q11.2 deletion syndrome.
The condition is caused by the deletion of a small piece of chromosome 22. According to Wikipedia it affects between one in 2,000 and one in 4,000 live births.
Symptoms include significant feeding problems, hearing loss, learning difficulties and immune disorders.
Tommy spent a lot of his first year in hospital. He had a Nissen’s fundoplication, an operation used to treat gastro-oesophageal reflux, which is when swallowed food comes back up the foodpipe or oesophagus.
He also had a pulmonary valve stenosis correction, as he had the heart valve disorder.
Tommy’s mum, Katy-Jo, said: “Although he has low muscle tone he can now crawl, walk and stand up by himself and is just starting to climb and enjoy the park.
“The worst symptom of Tommy’s syndrome is his severe dysphagia. He has needed constant suctioning from the day he was born and because of his struggle to swallow even his own saliva he suffers with frequent pneumonia from aspirating. Tommy also has severe speech delay. Although he has no learning difficulties and knows everything you say and lets you know in his own way exactly what he wants, he has been getting more and more frustrated of late and we have started seeing an independent speech and language therapist.”
Paul Harris, chairman of Charity for Kids, said: “We are pleased to purchase Tommy an iPad Mini. We are delighted to help with Tommy’s development and wellbeing.”
The charity also supplied a specialised scoliosis suit for 12-year-old Katie Histed, who lives just off The Ridge.
Katie has quadriplegic cerebral palsy, a multitude of health problems with her lungs and is unable to stand, speak, walk or swallow and needs 24-hour care.
Charity for Kids was recommended to the family by Katie’s physiotherapist who she sees regularly to help with her strength and posture. She needs physiotherapy since undergoing a hip operation in August 2013 to try and get her legs straighter. The scoliosis suit is designed to help with both her physio and posture.
Mr Harris said: “Katie has a wonderful smile that helps keep her family going with the 24-hour care that Katie needs.”