Family fundraise as 'last option' to save North Wales schoolboy battling rare condition
A little boy who sparked concern by constantly asking for drinks was diagnosed with an ''extremely rare'' condition which affects only 2,000 people worldwide.
Ryley Standell has spent most of his life in and out of hospital ever since pre-school staff raised concerns about him always being thirsty. The issue "niggled" at his parents, Jamie and Chris, who took the then three-year-old to the doctors.After a multitude of tests, he was was diagnosed with a rare genetic disease called Cystinosis, which attacks many parts of the body and has now left Ryley with end stage renal failure.
He needs a kidney transplant, but with the coronavirus pandemic putting the brakes on the procedure, it's meant Ryley has had to undergo 18 hours of dialysis every day for the last nine months and take countless medications.He also has to be careful with what food he eats, is fed through a tube, and can only drink 900ml of fluid per day, which his family say he "struggles with."But now, a huge fundraising drive has been launched to raise £85,000 in a bid to pay for private treatment and aftercare for the Kinmel Bay nine-year-old.Ryley's mum, Jamie said: "Ryley was a healthy baby, he was overdue but nothing was wrong."It wasn't until he got to playgroup that the staff mentioned he was constantly asking for drinks."It niggled at me so I took him to the doctors and they noticed there was sugar and protein in his urine."He was referred to hospital for blood tests, but none were taken because medics said he 'looked fine' and sent us home."But I had a gut feeling that something wasn't quite right, so I persisted with the GP and we were sent back again for more tests."Jamie added: "They came back showing that Ryley had problems with his salt levels."They originally thought he had diabetes and tested his blood sugar all the time, which was coming back as normal."He then ended up having a kidney biopsy and Alder Hey Children's Hospital got involved before Ryley was diagnosed with Cystinosis."
Cystinosis causes an increase of amino acid, cystine to form crystals in many organs of the body.This build up of crystals form in the kidneys and the eyes, and later in the muscles, pancreas, thyroid gland and white blood cells.Jamie said only 2,000 people in the world that have the "extremely rare condition," and there's only a 1 in 200,000 chance of two parents getting together and having a child who develops it.The mum-of-two said she and her husband, Chris were both matches to be kidney donors for the St Elfod School pupil, but the six-month testing regime that is needed before a transplant can go ahead has been halted because of coronavirus.Speaking from Alder Hey, Jamie said: "It's so frustrating, if not for Covid, Ryley would have had a transplant by now but instead, we have to watch him suffer and it's so hard."It makes you feel so helpless, he's just so poorly day in, day out, it just doesn't stop for him and it's heartbreaking."It's been hospital trip after hospital trip due to problems with Ryley's blood pressure because of the dialysis, it's just a battle for him spending 18 hours every day stuck to a machine."It's really hard for the family seeing him like that and I said to his dad, we need to try and do something."My family intervened and asked if we could try and raise money to go private after one of my relatives looked into it and found out the cost of a full transplant from start to finish is around £85,000."A fundraising page was set up and less than 24 hours later, almost £2,000 was raised, the support we've had so far has been outstanding."We can't thank people enough."
The crowdfunding page, set up by Jamie's sister states: "The task we have set here is huge we know, but we have to do all that we can to support him, he is only nine years old."For the past six years, Ryley has missed out on so many things that kids his age love to do and we are hoping and praying he doesn’t miss out on anymore."Please please please help if you are able, every penny counts and if you cant donate then please just share this page."This is our last option to save our boy."
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