Watch as mother makes impassioned plea to Sunderland Royal Hospital to secure funding for treatments she hopes can prolong her baby's life

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‘He has such a beautiful smile and wonderful personality and all I want is for him to have the longest life possible’

A mother is pleading with Sunderland Royal Hospital to secure the funding to give her 11-month-old son Grayson the “chance to live as long as possible” after she said she was told there was not enough evidence the treatments being trialled would work and to start preparing for his end of life care.

Little Grayson was born premature at 34 weeks old and mother, Chemi Lewis, 26, first noticed there “was something wrong” when he was unable to focus his eyes on people or items.

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Tests revealed he had the genetic defect, PRPS1, which has resulted in him being blind and having severe hearing loss.

Chemi suspected this may be the case as it’s a genetic condition which runs in her family and has also afflicted her niece.

However, further devastating news was to follow when at four months old, tests revealed Grayson had the associated but incredibly rare condition ART Syndrome. 

Chemi Lewis with baby Grayson who suffers from ART Syndrome.Chemi Lewis with baby Grayson who suffers from ART Syndrome.
Chemi Lewis with baby Grayson who suffers from ART Syndrome.

Chemi, who lives in Houghton, said: “PRPS1 is normally associated with some form of syndrome, but unfortunately Grayson has got the worst one. Apparently he is the only baby in the country to have it and it manifests itself much worse in boys than girls.

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“It affects his muscle tone which means Grayson struggles to hold his neck up and will be in a wheelchair. The biggest problem is it has left him with no real immune system. He is constantly picking infections up and we are constantly in and out of hospital every few days.

“Doctors have said it’s one of these infections which will eventually cause Grayson’s death.

“They have not put a time on how long Grayson will live for, but research shows boys with ART Syndrome under normal circumstances don’t survive beyond six-years-old.”

However, Chemi was given a glimmer of hope when his paediatrician identified a number of treatments which could potentially help to build brave Grayson’s immune system with a specially targeted series of vitamin treatments in the form of L-tryptophan, NADS+ and the drug  S-adenosylmethionine (SAM).

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According to the charity Metabolic Support UK, the drug SAM replaces Purine, a chemical compound which is vital to the function of our bodies.

The charity highlights the treatment “is still under evaluation but may be useful to some individuals” with ART Syndrome.

Chemi said: “Grayson’s doctor put him on a 10-day trial of all three treatments and it seemed to have positive results as he had two weeks where he didn’t have to go into hospital. Normally we are in every four days.”

That’s why Chemi was left devastated following an appointment at Sunderland Royal Hospital on April 26 when she said she was told the treatments wouldn’t be continuing.

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Chemi added: “I asked for more of the treatments and was told by his doctor that the hospital isn’t able to fund them due to a lack of evidence that it would work.

“He said it was a conversation he didn’t want to have, but we were advised to put plans in place for Grayson’s end of life care so we know what palliative care we want and where we would like Grayson to be when the time comes. 

“Grayson’s doctor has been brilliant and even funded the some of the treatments out of his own pocket, but the hospital said they aren’t able to continue to fund it due to lack of proof.

“The treatment coincided with two weeks of Grayson not having to go into hospital. I’m also aware of two boys in Europe who’ve had this treatment and one is now 16 and the other is 18, so who’s to say it can’t do the same for Grayson?

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“He has such a beautiful smile and a wonderful personality. Even if he is blind and does end up in a wheelchair, all I want is for him to have the longest and best life possible.

“I’m just pleading for the hospital to find the funding and reconsider the treatment to give Grayson that extra bit of life.”

11-month-old Grayson is blind and has severe hearing loss.11-month-old Grayson is blind and has severe hearing loss.
11-month-old Grayson is blind and has severe hearing loss.

With six weeks having already passed since the treatment ended, Chemi has already started looking at the possibility of obtaining it privately.

She said: “Grayson’s doctor is looking into the exact costs of the treatments but it looks like around £150 for every 10 day supply. 

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“Once I get the costs confirmed I’m going to set-up a CrowdFunding page, but if anyone can help to raise money for Grayson’s treatment then please get in touch.”

Responding to Grayson’s situation, 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."

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A spokesperson for the North East and North Cumbria Integrated Care Board (ICB) added: "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."

Chemi has tragically already lost one child who died at 16 weeks old from sudden infant death syndrome.

Anyone who feels they can help Chemi and Grayson can contact her via email at [email protected]

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