Published: 00:00, 16 May 2014
| Updated: 08:52, 16 May 2014
Two mums have joined forces to help a young boy who is one of only two children in the world living with a rare genetic chromosome disorder.
Stacey Weller, of Charlotte Street, Sittingbourne, is taking part in next month’s Colour Run in support of Harry Sheppard.
The 15-month-old’s condition means he has severe development delay. He is unable to sit up, walk, talk or crawl.
He is on oxygen 24/7 and is feed via a tube as his throat muscles are to weak to swallow milk or food. Eighteen other youngsters diagnosed with the syndrome didn’t make it to adulthood.
The money raised from the 5k race, which takes place at Wembley Park in London on June 1, will go towards paying for specialist equipment.
This includes a wheelchair/pram, car and bath seats, and sensory items that parents Laura Satchell and Antony Sheppard need in order to look after Harry.
Miss Weller, 23, became friends with the family from Walderslade when her son, Archie, was on the Oliver Fisher special-care baby unit at Medway Maritime Hospital, Gillingham, when he was born 13 weeks early in May last year.
Harry had been on the ward since he was born on January 28.
The mum-of-two said: “I was very close to them while at the hospital, and I was there to comfort them when they got bad news. I just want to be there for them and do all I can to help.”
Miss Satchell is also taking part in the event, to help reach the £4,000 fundraising target.
She said: “Harry was diagnosed two weeks after birth. He could not breathe and needed immediate CPR, adrenaline drugs and a life-support machine.
“In March last year doctors suggested ending his care, but giving up on him was not an option.
“On August 23, after 210 days in hospital, he came home. Since then, Harry has celebrated his first birthday.
“We know we probably won’t have years and years with Harry, which is heartbreaking, but we live every day to the full, and we are going to make sure he lives the best life he could by doing everything we can with him to make memories that will last forever.”
To date, £2,891 has been raised for Harry through donations and fundraising events.
In a bid to reach their £4,000 target, Harry’s parents have started their own business. Casting Memories creates cast keepsakes of newborn baby feet and hands.
The couple are hoping their appeal, called Harry’s Foundation, will be given a further cash injection when a fun day takes place at Borden Grammar School, Avenue of Remembrance, Sittingbourne, on May 31, between 11am and 3pm.
Attractions include a cake and plant stall, fete and car boot sale and a tombola.
For more information about the boot fair call 07585 701765. To make a donation to the cause, visit www.gofundme.com/68rgf0.
For more details about Casting Memories, visit its Facebook page.
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