Ballyclare boy Cameron Lindsay and his family have jetted off to the USA for treatment for his rare neurological condition, thanks to local fundraisers.
On Monday (June 29) Cameron, who suffers from Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), and his family boarded a plane to New Jersey, where Cameron will undergo 10 days of testing to investigate his condition and determine a course of treatment.
The trip has been financed by a raft of local funding initiatives which have so far raised around £25,000, the most recent of which was a gala dinner at the Theatre at the Mill last Friday evening (June 26).
The family’s journey is being followed by a television team from Tigress Productions, who are producing a programme entitled “Medical Mysteries” which is set to be screened on Channel 5 in October and is expected to fetch around two million viewers.
Cameron’s struggle is also set to feature in a BBC Horizon show on medical conditions.
Speaking ahead of their US trip, Cameron’s mum Natasha Lindsay told The Times that she hopes the television shows will raise awareness of PANDAS.
“The Tigress Productions programme is about obscure medical conditions and we hope it will raise awareness from our point of view,” she revealed.
“They came to our home to interview us, to observe Cameron’s life, and we will meet them at Heathrow before we board the plane for America. We are also taking a camcorder with us to America.
“The BBC Horizon programme is still in the planning stage but it will be similar.”
Natasha and her family are hopeful that their 10-day trip to the USA will advance her son’s treatment.
“The PANDAS lab that we are going to is run by leading PANDAS researcher Dr Trifiletti, and the sample will be forwarded to Dr Madeleine Cunningham, who founded the Cunningham Panel Tests, at the Moleculera lab in Oklahoma,” she explained.
“These give an indication of certain markers which indicate which drugs are needed in the treatment of PANDAS.
“One of the specialists believes that Cameron may have an underlying condition in addition to PANDAS.
“After ten days we will come home but we are looking at flights going out again on August 16 to get the results.
“At that stage we will meet Dr Trifiletti and hopefully Cameron can start some treatment.”
The family are also considering sending Cameron for a PET scan, whereby radioactive dye is injected into his system to help map his basal ganglia, and are investigating a music therapy programme in Toronto which they say has yielded impressive results for PANDAS sufferers.
Paying tribute to local fundraisers, Natasha commented: “We can’t thank people enough for their help.
“We are eternally grateful. It’s thanks to those people that we are packing our cases and getting on this plane.
“We wouldn’t be able to do it if we didn’t have that support from the community.”
Meanwhile, a gala fundraising evening in aid of Cameron’s PANDAS Fund raised around £3,500 for the local boy’s treatment.
The event, which took place at The Theatre at The Mill on Friday June 26, was attended by around 120 people.
Guests were entertained by singers Malachi Cush, rockers Flash Harry and James Huish, who despite fracturing his jaw in a car accident earlier in the week was determined to perform.
The event is the latest in a fundraising drive to raise £50,000 to fund Cameron’s continuing treatment for little-known condition Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).
The family have so far raised around £25,000 to finance their 12-year-old son’s treatment.
“It couldn’t have gone better,” said Cameron’s mum Natasha Lindsay, who previously worked as a Marketing Assistant at the Theatre at The Mill’s Box Office.
“The event was a sell-out and everybody had good fun.
“We were well supported with the Chief executive of Antrim and Newtownabbey Borough Council Jacqui Dixon and several other councillors turning up.
“I had people coming up to me in tears and saying how moved they were to hear Cameron’s story.”
“Holding the event at the Theatre at The Mill made it extra special, as we are all like one big family there,” she concluded.
During the event, Cameron’s 10-year-old sister Annie took to the mike, performing three songs herself before being serenaded by Malachi Cush and James Huish.
A film crew from Tigress Productions also captured the event on camera for the forthcoming Medical Mysteries programme on Channel 5.
Given the cost of treatment for the rare illness in America, Natasha says that the family will have to continue fundraising “indefinitely” in order to finance Cameron’s medical procedures.
The family are also in the process of setting up an official charity in Cameron’s name after battling for treatment for their son’s condition.
“It will make it better for families who are coming after us,” explained Natasha.
In the meantime, the family say it is “very comforting” to know that the local community is behind them.
“We want to thank everyone for their donations, for their positive thoughts and prayers,” said Natasha.
“People have been prepared to give up time to help us, and we can’t thank them enough.”
To donate to Cameron’s PANDAS fund, visit: http://www.gofundme.com/o9lrao