A NEWPORT girl with a rare condition meaning she needs regular injections to grow is awaiting an operation - and her start at high school.
11-year-old Kara-Jay Horton was diagnosed with Turner syndrome – a genetic condition which affects only females and occurs when one of the X chromosomes is missing or partially missing - in 2013.
It affects around one in every 2,000 baby girls, with no known cure.
Symptoms vary between people with Turner syndrome, but it generally impacts height and can cause fertility issues. People with the condition need regular checks on their heart, kidneys, and reproductive system.
Kara-Jay is awaiting an operation on her ear; hearing loss is one of the major medical concerns in females with Turner syndrome, but it’s unclear if this is “directly related” to her needing the operation.
“She’s doing good generally,” said her mother, Kelly Horton.
“She’ll be starting high school in September; she’s a mixture of excited and nervous but having extra transition work has helped.”
Kara-Jay will attend the special needs unit at Llanwern High School in the next academic year.
“If she hadn’t been diagnosed with Turner syndrome, we would have never heard of it,” added Ms Horton.
“In the UK there’s only one charity for Turner syndrome – TSSS (Turner Syndrome Support Syndrome) – and it’s important to raise awareness and money to help them.”
Kara-Jay’s family have supported TSSS over the years.
College students has their heads shaved for the charity and Kara-Jay's grandfather, Darren Rice, got a TSSS tattoo raising money for the charity.
Mr Rice - who is also a magnet fisher - hosts annual family fun days to raise awareness and funds for TSSS, but these were on hold during the Covid pandemic.
This weekend the event will return, with it taking over St Patrick's Social Club on Cromwell Road, Newport, on Saturday, June 18.
The fun – from midday to 4pm – will include a bouncy castle, face painting, music, games, eight stalls, tombola, a raffle and more.
“TSSS doesn’t get government funding so it’s about raising money and awareness,” said Mr Rice.
“We’ve raised hundreds of pounds at previous family fun days, and this will be our first one since lockdown.”
Kara-Jay will be at the event and is “very excited”.
Businesses have donated to the raffle, which has already raised more than £100 and has 42 prizes including:
- £40 Blaina Wharf voucher;
- Meal for two at Toby Carvery;
- Bingo and meal for four at Castle Bingo;
- And much more.
Tesco and Morrisons have donated hampers to the raffle, while Sainsbury’s has donated cakes to be sold on the day. Entry to the event is free.
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