Sunderland mother launches funding campaign to purchase the treatments she hopes can prolong her baby's life

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

Doting mother Chemie Lewis has launched a GoFundMe appeal to access the treatments she believes can prolong the life of her 11-month-old son.

She also hopes to prove to Sunderland Royal Hospital that the treatments are working on Grayson’s immune system in the hope doctors will agree to provide the treatment long-term on the NHS.

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

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

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

However, further devastating news was to follow when at four months old, tests revealed Grayson had the associated but incredibly rare condition ART Syndrome.  Chemie, who lives in Houghton, said: “It affects his muscle tone which means Grayson struggles to hold his neck up and will be in a wheelchair.

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.

“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.”

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Doctors at Sunderland Royal Hospital have said one of these infections will eventually cause Grayson’s death, with Chemie’s own research suggesting children with the condition rarely live beyond six years of age.

However, earlier this year Chemie was given a glimmer of hope when his paediatrician identified a number of treatments which could potentially help to build-up 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).

During a 10 day trial period, Chemie said the treatments “made a real difference” with Grayson staying out of hospital for the longest period since he was born.

This is why Chemie 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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Chemie 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.”

Determined to give her son the “best possible chance of living as long as possible”, Chemie has now set up a GoFundMe page to fund the £450 per month costs to recommence the three combined treatments for Grayson.

She said: “I’ve located the website of the company which provides the treatments and you are able to purchase them privately.

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“I’m initially looking to raise enough money - £1,800 - to provide four months worth of treatment.

“After two months I hope to be able to go back to Sunderland Royal Hospital to show them that it’s working in the hope they will change their minds about funding the treatments.

“I definitely do think it will make a difference. During the 10 days Grayson trialled the treatment he remained out of hospital for two weeks.

“He is is normally having to go into hospital every few days but this was the longest he has ever been out of hospital.

“I don’t think this was a coincidence.”

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According to the charity Metabolic Support UK, the drug S-adenosylmethionine (SAM) - one if the treatments being trialled on Grayson - 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.

Chemie has also cited case studies of children in other European countries who have undergone the same treatments and are “now 16 and 18-years-old”.

She added: “Grayson has such a beautiful smile and wonderful personality and all I want is for him to have the longest life possible.

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“The less he gets infections the better quality of life he will have. Time is really important. Grayson currently has another infection and I want to start these treatments again as soon as possible.

“Please help by donating as much as you can to give Grayson the chance to live as long as possible.

“Every little bit will help.”

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.

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"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 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.

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"We are linking with our colleagues at South Tyneside and Sunderland NHS Foundation Trust to investigate the situation in more detail."

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

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

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