Ballyclare PANDAS sufferer Cameron Lindsay is eagerly awaiting the results of tests in America which could shape treatment of his condition.
On July 9, Cameron and his family returned home after undergoing a barrage of tests in the USA to determine a course of treatment for his rare neurological condition, Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).
The trip, paid for by local fundraisers, included a consultation with top PANDAS specialist Dr Trifiletti.
“Cameron had 22 tubes of blood taken out of him over three and a half hours,” revealed Cameron’s mum Natasha.
“Some of the blood will go to Oklahoma to Dr Madeleine Cunningham, who founded the Cunningham Panel Tests. Some will go to a blood lab to try to get to the bottom of Cameron’s illness, as Dr Trifiletti has always felt there is an underlying condition with Cameron.
“In total the tests will cost about £12,000 so we will definitely have to continue fundraising, but it was amazing to be able to pay for all the tests that Cameron needed thanks to the generosity and kindness of people back home.”
Natasha says that the visit has given the family hope for the future.
“We didn‘t feel so alone, we realised how many other people are dealing with this condition,” she explained.
“Also, we weren’t having the same conversation as we had at home about symptom management and managing Cameron’s future around the condition. There are treatments that can get these kids back to health again. We felt very reassured that they will get to the bottom of what is going on and develop a treatment plan.”
The family will return to America to receive the test results on August 16. During this trip, they will also fly to Toronto to observe a music therapy programme for young people with neurological conditions and are hoping to travel to Detroit so Cameron can undergo a PET scan with a PANDAS researcher.
Back home, a range of fundraising initiatives are ongoing.
Larne Golf Club has raised almost £9000, and club Captain Bobby Niblock thanked all those who had helped in the fundraising effort.
Meanwhile, six open gardens raised an impressive £1300, and Cameron’s family are set to auction a Real Madrid shirt signed by football ace Ronaldo on their website, http://thecameronlindsayappeal.weebly.com/. To donate, visit: http://www.gofundme.com/o9lrao