The parents of the 'only baby boy in the UK with a rare genetic condtion' have pleaded for the NHS to approve funding for a treatment that could extend his life.
Mum Chemieleigh Lewis, 26, and dad Adam Bell, 27, were left heartbroken when they found out their son, Grayson Bell, had Arts Syndrome – a rare complication of genetic condition PRPS1. The condition causes issues with insulin regulation, the immune system and sight and hearing loss.
There are less than 50 cases of the syndrome that have been reported worldwide, according to Metabolic Support UK. It is believed that 11-month-old Grayson, from Hall Lane, Houghton-le-Spring, is the only one in the UK with condition.
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In many cases, children with Arts Syndrom don't live beyond the age of six. Two boys in Australia have managed to live into their teens after being treated with a drug called S-adenosylmethionine (SAMe). However, this treatment is still under evaluation and Grayson's family have to anxiously wait for NHS to approve funding for the treatment.
Taking to Facebook on Saturday night (May 4), the mum issued a desperate plea online. She asked people to share her son's story and push for funding.
Speaking to the Mirror, Chemie said she first noticed her son had issues with his sight and hearing shortly after giving birth and how it lead to his diagnosis.
She explained: "Grayson was born early, at 34 weeks and he was really poorly when he was first born. He then was diagnosed with hyperinsulinism, which is like diabetes, but the opposite. His body produces too much insulin.
"Then we noticed that he couldn't quite focus his eyes, while he was in the NICU in Sunderland Royal Hospital. I mentioned it but they said he doesn't get an eye test because he was born at 34 weeks and not 31. They only do eye tests at 31 weeks. But after about seven weeks he still couldn't focus. I told my health visitor and they agreed it wasn't normal.
"He got booked in for an eye test, and then from the eye test, it then went to electrical testing at the RVI and then they determined off the electrical test and that he had no eyesight. He had more testing and they confirmed that he had severe hearing loss too would need cochlear implants. We're on the waiting list for them.
"The hospital then did some genetic testing, and found out that Grayson had the PRPS1 gene, which always affects boys worse than it affects girls, Grayson got the worst part of it. Arts Syndrome comes in following that gene and it makes him lose all muscle tone and constantly get infections. One of those infections will probably kill him because even antibiotics don't touch any of them."
The former care worker claims she had to leave her job to take care of her son as he needs constant care, including insulin and food every four hours.
The couple have two other children, Gracie-leigh, five, and Hugo, two, who also have additional needs. Her eldest daughter has the PRPS1 gene. While it is not as severe as her brother's condition, due to how differently it affects girls, she "will still lose all of her hearing and probably all of her sight".
Due to the severe affects it has had on Grayson, Chemie and Adam are hoping the hospital will be able to get approval for his treatment as they believe it would "cost just under £40,000" for his care outside of the NHS.
Chemie added: "It hasn't been easy but we are still fighting to get that funding for him. His doctor has been amazing and was able to fund a trial on the medication for us for 10 days, which we really appreciate, especially since he didn't know whether the funding could be approved. But it could extend his life, we have to try."
Dr Lorna Gillespie, Clinical Director for Paediatrics at South Tyneside and Sunderland NHS Foundation said: “We are supporting young Grayson and his family and appreciate his parents want the best for him. Together, we have been looking at what is available to give him all the help possible for his rare condition and to help his immune system.
"To help Grayson's family, we have already paid for a supply of these vitamins through the Trust's own funds while we try to organise a longer-term plan. We have made an Individual Funding Request (IFR) on behalf of Grayson and his family to the North East and North Cumbria Integrated Care Board and will continue to support Grayson while we await the outcome of this."
A spokesperson the North East and North Cumbria Integrated Care Board (ICB) said in a statement: "We are always sorry to hear of families in particularly difficult situations, and very much understand the concern of parents. We work hard to ensure that care is provided fairly and equitably across our region, as well as looking into exceptional circumstances when they occur. We are linking with our colleagues at South Tyneside and Sunderland NHS Foundation Trust to investigate the situation in more detail."