Campaign kicks off to help Wollescote family rocked by rare genetic condition (From Stourbridge News)
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Campaign kicks off to help Wollescote family rocked by rare genetic condition
Updated 5:06pm Thursday 17th July 2014 in News
Buy this photo Jayden Sharp with his mum Penny, left, and charity fundraiser Sylvia Horton, right. Buy photo: 281449L
A KIND-HEARTED Wollescote fundraiser has kick-started a campaign to raise money for a family rocked by a rare health condition.
Little Jayden Sharp was born two-and-a-half years ago with the genetic disorder, affecting only 1 in every 10,000, which meant his upper oesophagus ended in a pouch rather than connecting to his stomach - and the lower part was joined to his windpipe.
He was also born with spinal and limb defects, a heart problem, bowel and bladder problems and impaired kidneys.
The youngster’s condition, known as TOF/OA and VACTERL syndrome, means he is under the care of more than 30 health professionals and life has become an endless stream of medical appointments for his mum Penny and dad John.
To help give the family a boost – Wollescote grandmother and charity fundraiser Sylvia Horton has organised a campaign to raise money to help give Jayden, his mum and dad and their other children Chloe, aged 15, and Jack, aged ten, the best Christmas they’ve ever had and to help pay for equipment to improve Jayden’s quality of life.
Sylvia said: “I always raise money for cancer charities as I had breast cancer. This year I wanted to raise money for someone in our area so I thought let's help little Jayden. He has about 13 hospital appointments each week and his mum hasn't had any rest since she had him.
"I want to give the family a Christmas to remember. I want to raise over a £1,000 and I'm trying to get everybody together in the area. We're doing something every single month."
The first event saw members of Sylvia’s Fantasy Dance Group and regulars from The Queensway pub turn out for a sponsored walk on the cricket pitch opposite Wollescote Park on Wednesday July 9.
Further fundraisers are also in the pipeline including a fun day at The Queensway on August 16 and a show at Hob Green Primary School in December.
Jayden’s mum Penny said she has been overwhelmed by the compassion and generosity shown by the community towards Jayden, She said: “It's amazing. It's absolutely incredible that people I don't even know are helping. It's beyond words."
Jayden was born six weeks early at Russells Hall Hospital where he was revived before being transferred to Birmingham Children's Hospital for an emergency operation.
Unable to eat solid food and sleep properly, he cannot walk far, talk properly and his teeth have rotted due to the amount of medication he has to take; he also sufferers from recurrent chest infections and needs further operations on his kidneys and his tethered spinal cord to save his mobility. He will also need his oesophagus regularly stretched throughout his life.
Penny said Jayden's condition had knocked the family for six.
She added: "Our GP has only ever seen one case in 28 years. We have had to adjust to it but it's very stressful on our family life and other children; and we have no extended family who can help out, which puts even more pressure on us."