A FUN day is being held in Kinmel Bay to raise vital funds for a young boy in desperate need of a kidney transplant.
Ryley Standell, aged nine, was diagnosed with a rare genetic disease called Cystinosis when he was just three-years-old. For the past six years, Ryley has fought the disease with "every ounce of strength" but it is now taking its toll on his body.
Mum Jamie said Ryley is currently struggling "immensely"; the youngster vomits "constantly" and experiences fatigue.
His family is trying to raise £85,000 in a bid to pay for private treatment and aftercare.
Jamie, who has husband Chris, said: "Ryley is struggling immensely, this is a physical and mental battle daily. He was anxious about receiving a kidney transplant but now he cannot wait any longer and wants his transplant to happen as soon as possible.
"We realise that £85,000 is a extremely huge amount of money to try and raise but because we witness his struggles each and every day, it would mean the absolute world to us as a family.
"Covid-19 has put huge delays on his dad’s testing process in order for him to become a live donor for Ryley."
In June last year, Ryley started receiving dialysis due to his kidneys no longer functioning correctly. Since that time, Ryley has been on dialysis every day and spends 18 hours a day hooked up to a machine.
Details of family fun day for little Ryley
Ryley is unable to eat and has to be fed nutrients through a tube. The youngster has been placed on a fluid restriction and he is only allowed 900ml of fluids a day.
Jamie said: "Spreading awareness about Ryley’s rare genetic disease is overly important to us as not many people have heard of Cystinosis.
"Creating awareness is vital, not only for medical staff but also for other parents who may be able to spot signs and symptoms early if more awareness was delivered."
The fun day for Ryley will be held from 12pm on May 22 at Baysville Coffee and Grill in Kinmel Bay.
All Covid regulations will be adhered to.
"The owner of Baysville, Nisey, has been a huge supporter and is working tirelessly to make the fun day happen," Jamie said.
"With Covid-19 still being present we will be ensuring all Covid-19 guidelines are adhered to. It will be a outdoor event, socially distance, hand sanitizer and wash stations will be provided to ensure we are Covid secure and reduce as much risk as possible to the public.
"To be able to host a event so big is fantastic but it will also provide some much needed fun and entertainment to the community and bring us all together after such tough lockdown.
"Ryley will be attending the fun day and I am looking forward to him understanding the extent of supporters he has around him.
"The response from the community has been overwhelming and we are still shocked at how well we have done so far.
"We can't thank everyone enough for their kindness and generosity.
"So many people have reached out to me to help. We have friends doing a sponsored walk and a huge raffle. We are also conducting a huge raffle that so many local businesses that have kindly donated prizes for."
To donate visit www.justgiving.com/crowdfunding/hayley-trimm
More than £14,000 has so far been raised.
The family say that if a 'miracle' happens and Ryley receives a transplant on the NHS, they will focus and fund his aftercare and any remaining money will be given to the Cystinosis Research Foundation.
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