Belfast Telegraph

Dad of brain disease teen to raise funds for vital drugs by running 210 miles between every Irish League pitch

By Victoria Leonard

The father of a Co Antrim teenager suffering from a rare brain disease is to run more than 210 miles between all 12 Irish League football grounds to raise funds for life-changing drugs.

Jonny Lindsay's 15-year-old boy Cameron has spent four years battling paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (Pandas).

The condition has caused the former straight-A student problems including age regression, tics, obsessive compulsive disorder (OCD), emotional crises, aggression, self-harm, severe head pain and hallucinations.

With UK treatment of Pandas in its infancy, the family travelled to the United States to meet an expert, who advised a regime of specialist antibiotics and courses of intravenous immunoglobulin (IVIG) or plasmapherisis.

But with the majority of the treatment unavailable on the NHS, they must raise thousands for the treatment.

The fundraising run, which starts at Ards FC in Bangor on October 28 and lasts for eight days, will see him cover the equivalent of a marathon a day.

It will be the first fundraiser for a charity the Lindsays are establishing - Cameron's Pandas Fund for Families.

A year ago Cameron and mum Natasha appeared on ITV's This Morning with Philip Schofield and Holly Willoughby to raise awareness of the condition.

In addition to raising money, for his son, Jonny will split the proceeds with the family of Waringston boy Cameron Truesdale (12), who is in Mexico receiving treatment for a brain tumour.

Mrs Lindsay (41), who is recovering from post-traumatic stress disorder caused by the pressures of dealing with her son's condition, said that private treatment was the family's "last chance to give our boy a normal quality of life".

"Cameron is only 15 and he doesn't have a life worth living," she added.

"He gets really down, he is fatigued and can't do anything.

"He has OCD and severe anxiety, so it's a struggle even to go out to play football with his friends.

"He can only manage a few hours in school a week and has a home tutor.

"He has problems with his memory and when he is having a Pandas fit he can lash out or try to self-harm.

"He has been battling this disease for four years and time is marching on.

"Cameron was lucky enough to have IVIG treatment on the NHS before we went to America two years ago.

We got our boy back for six weeks, but since then he has received no medical treatment on the NHS here apart from cognitive behavioural therapy."

She stressed that the antibiotics could prove "life-changing" for Cameron.

"Physically he is not able to do anything, yet there is expert evidence that prophylactic antibiotics should be given to Pandas sufferers, and we want to get him on the privately scripted antibiotics by the end of the year," she said.

"The research papers and specialists say that these antibiotics could protect him from picking up other illnesses, which Pandas sufferers are prone to.

"Some Pandas sufferers have improved dramatically just by taking antibiotics, which they may need to be on until they are in their 20s or 30s, and that has given Cameron hope.

"There are kids in other parts of the UK on these medicines on the NHS, but they are not available here, and as they cost a few hundred pounds a month we need to fundraise.

"Our goal with this run is to raise around £2,000, which will be split between our son and Cameron Truesdale.

"We have been working for two years to get this treatment, and if it allows him to get a little bit of his life back it will all be worth it."

Mr Lindsay (43) said the fundraising would allow him to combine his two passions - running and football.

"I'm a Linfield fan and I have run 125 marathons to date," he added. "The fundraising run will finish at Ferney Park, Ballinamallard FC, on November 4.

"The past four years have been hard emotionally as well as physically. Every parent wants to make sure they make life as positive as possible for their child, and we hope that this private treatment will give Cameron his life back.

"I was also quite moved by the story of Cameron Truesdale. Our boys share the same Christian name and were diagnosed at the same age, so I can appreciate what his family is going through and would like to help."

The Belfast Trust said it could not comment on individual cases, but its "management of Pandas and PANS is in line with European guidelines with diagnosis and management of this disorder" and it was treating "a number" of patients with such conditions.

To donate to Jonny's fundraising efforts, visit Justgiving.com.

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