A FATHER is using his birthday to try and raise awareness of his son’s rare condition in the hope that one day a cure may be found.

Chris Standell, of Kinmel Bay, is raising money for the charity Cystinosis Research Foundation. Chris’s son, Ryley, is seven. He was diagnosed at aged three with Cystinosis - a rare disease that is typically diagnosed prior to age two.

The genetic disease means Ryley suffers heavily with aches and pain. The Ysgol Glan Gele infant school pupil, in Abergele, feels “generally unwell” a majority of the time and is in stage four kidney failure.

Chris said there is only 2,000 people in the world that have been diagnosed with Cystinosis. It causes an increase in many parts of the body of a natural chemical, an amino acid called cystine. This build up causes cystine crystals to form in many organs of the body. These crystals form firstly in the kidneys and the eyes, and later in the muscles, pancreas, thyroid gland and white blood cells.

Chris, whose partner is Jamie Leigh Trimm, said: “We only found out Ryley had this condition because he was drinking so much day and night. He wasn’t as energetic as your usual child. Because it’s so rare, we need to raise awareness.

“The fundraising is going ok. We’ve raised £91 so far. I decided to do this for my birthday as it is one of the easiest ways to raise money for Cystinosis.”

Rhyl Journal:

Ryley is seven. Picture: Geoff Abbott

Ryley, who has sister Chloe, 11, was diagnosed when he was aged three.

Chris, 29, who works in security, added; “This was a late diagnosis for someone with this condition. It is usually diagnosed between the ages of 12 and 18-months. Usually children present symptoms such as failure to thrive and excessive vomiting but Ryley only has excessive thirst.

“Since he has been diagnosed we’ve had to adapt to a different way of life - the constant medication routine and trips to Alder Hey Children’s Hospital every four weeks for bloods to check his electrolytes and Cystine levels. We’ve also had to get used to interrupted sleeping patterns.”

It is estimated that Cystinosis occurs in somewhere between 1 in 100,000 to 1 in 200,000 live births. The next step for Ryley will be a kidney transplant.

“Ryley finds it hard to settle at night,” Chris said.

“The vigorous medication routine is frustrating for him. It makes him feels different and he says he wishes he didn’t have this condition.

“He is about 30 per cent kidney function at the moment. When this gets to about 20 per cent function, they will start testing myself and his mum to see if we are a match.”

To view Chris's fundraising Facebook page and to make a donation, head to www.facebook.com/donate/537343060112052