Fundraiser held as teen battles rare PANDAS disease

Craig and Kirsty Montgomery's son Ewan has a rare disease called PANDAS'collect of Ewan with his brother Fraser (9)
Craig and Kirsty Montgomery's son Ewan has a rare disease called PANDAS'collect of Ewan with his brother Fraser (9)

MOST people associate pandas with the endangered bears resident at Edinburgh Zoo, but it is also the name of a rare condition that predominantly affects children.

Ewan Montgomery, an artist, budding DJ and avid Hibernian fan, suffered everything from scarlet fever to tonsillitis as a young boy, but his family were left heartbroken when his symptoms triggered PANDAS at the age of nine.

He was suddenly left mostly house-bound with acute anxiety, tourette’s-like tics, severe insomnia and sensory abnormalities. According to his father Craig, it was “like losing a son overnight”. Although further treatment is needed for Ewan, now 13, his family are fighting back. They have linked up with local ska band Big Fat Panda for a fundraiser tomorrow in their home town of Musselburgh.

“We just want our son back,” Craig said. “People have been hugely supportive so far. We’ve had donations from Hibernian supporters groups, and our friends and family have been amazing.

“The funds have made a massive difference already. They’re helping us pay for important tests and supplements.”

PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is thought to affect around one in 2,000 children, but is only identified in a small number due to the common symptoms. Instead of becoming ill with a sore throat, cold symptoms or a temperature, the immune system attacks the brain of children with PANDAS, specifically the area controlling voluntary motor movements.

“It was all so confusing and scary,” Ewan’s mother Kirsty said. “Their personality 
completely changes and their interests fall away. A lot of parents liken it to having their child kidnapped. It was soul destroying to see our child suffer so much.

“Ewan used to play football and go out every night with his pals, but we suddenly had this anxious, terrified wee boy on our hands who was scared of his own shadow.”

Family and friends have raised more than £4,500 so far for Ewan, who had been receiving immunoglobulin (IVIG) at Edinburgh’s Royal Hospital for Sick Children, but must now seek private treatment as the NHS have “no more options available”.

Kirsty and Craig, who both now work part time and are self-employed, also care for Ewan’s nine-year-old brother Fraser, who is autistic.

Despite suffering multiple infections over the past few weeks, Ewan hopes to attend his ‘Pandasboi’ fundraiser at Musselburgh venue Ravelston House. Attendees are encouraged to wear black and white to raise awareness of PANDAS as a condition.

“We want our son to have a life again like any other 13 year old,” Craig said. “We want him to get back to the things he loves.”

You can find out more about the fundraiser HERE