Cwmbran toddler suffering rare disorder will need kidney
2:20pm Wednesday 7th August 2013 in News
A TODDLER from Cwmbran born with a rare genetic disease will need a new kidney before she turns 10 – 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 and rickets earlier this year.
At some point between the ages of eight and 10 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,mysister’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 10 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 one 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.
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. 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.
Comments are closed on this article.