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Every moment of life with young Philip Hoare is treasured by his loved ones who are appealing for help to take the seriously ill little boy on a holiday to remember.
Family and friends of the Ramsgate eight-year-old have set up The Philip Fund to raise cash for what may be his only chance to go to Euro Disney, Paris.
They are also fund-raising for an adapted car with ramps to take his electric wheelchair to ensure he can get out and about as much as possible. They have an overall target of £12,000.
The Dame Janet school pupil suffers from extremely debilitating and progressive Spinal Muscular Atrophy. It is severely limiting, causes constant illness and demands great care and regular hospital visits.
Philip, who lives with parents Susan and Martin and siblings Matthew, seven and Joanna, five, at Fitzroy Avenue, cannot walk, crawl or move himself.
His lungs are extremely weak, he is prone to chest infections, unable to cough, is permenently on antibiotics and regularly hospitalised with pneumonia.
At home he is often on a ventilator and has started to complain of back pain. He may need surgery to straighten his spine, a situation which itself involves considerable risks, not least those associated with anaesthetic.
Mum Susan said: “Philip amazes the doctors in the hospital every time he gets ill with his ability and strength to fight to get better. When we were first told his diagnosis, he was 18 months old and they said he wouldn’t live past two. He is still here and fighting.
“He is a very happy, lovely, patient little boy whose favourite thing is being in his powered wheelchair playing with his brother and sister.
“He never complains about what he goes through and rarely moans about being unable to join in with his friends with 'normal’ things.
"We want to take him on a holiday whilst we still can.”
His family are asking for support for their fund-raising, a main focus of which is a 38-mile sponsored cycle ride from the town’s Windmill Pub, around east Kent on August 24.
At least 20 people are taking part including family, Philip’s occupational therapist and a team from the pub.
Sponsors are wanted and donations invited, including contributions to a raffle.
Anyone able to help can contact Joanne Knight on 01843 850534.
An appeal has been made for a face painter who will donate their services at a fun day in aid of The Philip Fund at the Windmill in Newington Road on Saturday, August 9, from noon onwards. Paints will be provided. If you can help, please call 01843 592494.