Family and friends ready to give kidney for Cwmbran toddler Chloe
11:27am Thursday 8th August 2013 in News
A TODDLER from Cwmbran born with a rare genetic disease will need a new kidney before she turns ten – but uncles, aunts, parents and grandparents have already all offered to step forward and donate one of theirs.
Brave Chloe Phillips, two, was diagnosed with cystinosis – a condition which means there is an abnormal accumulation of amino acids in the body causing rickets and problems for the kidneys.
At some point between the ages of eight and ten she will suffer kidney failure and will need a transplant.
Her mum, Danielle Clissett, 24, a care assistant at the Thomas Gabriel Nursing Home, said: “Most of the family have offered to give a kidney: me, her dad, my dad, my sister, my sister’s partner, my mum, my gran, my uncle and auntie – it depends whose tissue matches her tissue.”
Although this won’t cure the disease and Chloe will always need to take medication, the new kidney may last for another ten to 15 years.
Her parents, Danielle and Rhys, did not realise that they were both carriers of cystinosis – they hadn’t even heard of it. They only found out after Chloe was diagnosed with the rare genetic disease, affecting fewer than 1 in 100,000 people, in June.
Earlier this year she was also diagnosed with rickets, and needs to wear special shoes to help her walk.
She will always have small stature due to rickets preventing her growing normally and must take medication including Mercaptamine, Omeprazole and sodium bicarbonate.
Miss Clissett said: “At first she wouldn’t take them and we had to squirt them in her mouth, but she’s getting better.”
Along with her toy monkey George, Chloe has to go to hospital every week for blood and urine tests.
George goes with her to appointments where he also gives a urine sample, and he takes medication each time Chloe needs to.
He went with her to hospital last week, when Chloe had to stay in for five days and was put on a drip due to the risk of dehydration associated with her condition.
She had sickness and diarrhoea and was not eating.
She came back home last Tuesday and is feeling better, looking forward to a trip to Peppa Pig World next month.
She also enjoys swimming in Pontypool and Newport and visiting animals at the Greenmeadow Community Farm.
Toddler’s family is supporting fun day to raise money for kidney charity
CHLOE will be helping to raise money for other kidney patients this Saturday, during a Fun Day in Cwmbran.
Family friend Jacqueline Brooks is organising the day, in aid of the British Kidney Patient Association, who are supporting Chloe and her family with grants.
They have given Miss Clissett two grants already this year, to buy new clothes and pajamas for Chloe. If her fridge, needed to store Chloe’s medication, stops working they also said they will pay for a replacement.
All are welcome at the Fun Day, held at the Halfway Hotel, in Commercial Street, Cwmbran, from 12.30 until late. Entry is free, with guests instead asked to donate as much as they can for the games and live music put on during the day.
There will be a tug-of-war at 3.30pm in Cwmbran Park, a bouncy castle, a Mr and Mrs game, barbecue, live music from Raging Hearts and Flying Low and a raffle. The town crier will help to drum up support outside.
Halfway Hotel landlord Malcolm Gough is the father of ex-Wales international and former Newport Gwent Dragons player Ian Gough, and he has donated tickets to watch the Ospreys and meet the players as a prize.
He offered the use of his pub for free and paid for the bouncy castle.
Businesses trading locally have also donated prizes.
Ms Brooks said: “I think nearly everyone from Cwmbran will be coming.”
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