Fundraising for Gwent tot who struggles to grow
5:36am Tuesday 17th June 2014 in Gwent news
Kara-Jay Horton 3 from Newport who suffers from a rare condition called Turners Syndrome with her parents Clinton and Kelly Horton and her brother Julius 5 (top left) and her sister Tiarna 4 (bottom right) (6307323)
A NEWPORT tot who was born with a rare condition which means that she has only one X chromosome, has been put in contact with other Welsh children who share her condition.
Three-year-old Kara-Jay Horton, of Beechwood, was born with Turner Syndrome, a condition which affects just one in every 2,000 baby girls.
Caused by an abnormal sex chromosome, instead of having an XX, Kara-Jay had only one X chromosome leading to problems which include reduced and delayed growth.
She faces years of growth hormones injections and further injections to help her enter puberty.
Now Mum Kelly Horton, 28, is hoping to raise awareness of the condition through family fun day events this week, after only hearing of the condition when her own daughter was diagnosed.
Her family will hold a two fundraising events- a sponsored Waxing by Glamshack on June 20 at The George, Maindee at 7pm and a family fun day on June 21 from 12pm to 4pm at the St Patrick's Social Cub, Cromwell Road, Newport, to raise funds awareness of Turner Syndrome.
The waxing event will see relatives Darren Rice, 49 and John Amos, 25, take part for The Turner Syndrome Support Society- the only charity in the UK which helps those affected.
The family hope to raise £1,000 and so far sponsorship has already raised around £400.
The waxing event will also feature a auction of signed sporting memorabilia.
The free fun day, which is open to the public, will feature live entertainment, a disco, face painting, a tombola and a raffle; with prizes including Newport County Tickets.
Now as a result of the story the Argus published last month Gwent families with Turner Syndrome have reached out to lend their support to the tot.
“As a result of the Argus story four families have got in touch with us," Mrs Horton said.
“One from Cardiff, Newport, Cwmbran and Bridgend-one is a family who have a little girl of a similar age with Turner who we are hoping will make it to the fun day.”
The Argus reported how Kara-Jay was diagnosed with the condition last September after parents Kelly and Clinton Horton became concerned that she wasn’t developing at a normal rate.
Following a trip to the doctor they discovered that Kara-Jay had the genetic condition that only affects females.
The condition which has made her infertile and has also caused her other health problems such as duplex kidneys-which means that she has three kidneys –and glue ear which affects her hearing.
But Kara-Jay is luckier than most, her mum explains, as typically sufferers of Turner Syndrome have physical features such as a webbed neck and a low hairline, which acts as diagnosis indicators from birth but Kara-Jay does not have these.
“We want to try to raise awareness and fun research for Turner Syndrome as it is estimated that 10,000 girls go undiagnosed, so we want to raise awareness for them to be tested,” her mum added.
Mrs Horton said that this lack of diagnosis is a result of girls having the ‘mosaic’ form of the condition whereby they are missing half an X chromosome rather than the ‘classic’ form like Kara-Jays where she is missing a full chromosome.
Kara-Jay is currently at Osborne Nursery and hopes to join Lliswerry Primary School in the near future, as the school have promised to do everything they can to adhere to her needs.
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