Terra Luscombe (left) stands with Dr Katherine Mullin, Annette Pecak, Pam MacDonald, and Megan Murdoch as Rochelle Mountain (front right) presents Ben Luscombe with $1405.30 May 14, proceeds from the Port Elgin Veterinary Clinic’s PANDAS fundraiser. Seven-year old Ben is living with PANDAS.
Hub Staff
Following months of fundraising and spreading awareness about PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus), the Port Elgin Veterinary Clinic donated $1405.30 to Terra and Ben Luscombe, May 14.
Terra is the mother of 7 year old Ben and said that since making the community more aware of PANDAS their GoFundMe page has received over $7,000 in donations. “We have had a very busy couple of months since the fundraiser started and have been able to do some amazing things because of everyone’s support,” said Luscombe in a May e-mail.
Ben travelled to Sick Kids Hospital in March for an MRI and an ECG and Terra said that Ben was very brave and professed that when he grows up he would like to become a doctor.
Later in March a film crew come from Toronto to hear their story then two weeks later came back to film for a documentary called, ‘Stolen Childhood.’
“[The documentary] is focusing on the PANDAS response in Canada and how our children are not being diagnosed and helped as they should,” said Terra. “It should release in August and I’m hoping to arrange a showing locally,” she added.
Terra said that another mother from Ontario with two children with PANDAS has spearheaded the documentary. More information can be found on their Facebook page[https://www.facebook.com/StolenChildhood2018/].
By the end of March Ben’s family flew to Calgary to attend Alberta’s Children's Hospital to see Canadian PANDAS Rheumatologist Dr Susa Bensler. “The trip was so worth the outcome. I wish we had met her sooner,” said Terra. “She had read everything about Ben before we got there and had even connected by phone with our local paediatrician who referred us. She confirmed Ben’s diagnosis of PANDAS and provided us with a plan to move forward with treatment,” she added.
Terra said they would not have been able to get Calgary, pay for flights, accommodations, food, a rental car and cover the cost of losing a week of pay without the support through GoFundMe and the special friends, family and strangers who so generously donated, including the Kincardine Lions Club and some very special members who made private donations. “I can’t thank them enough,” said Terra.
Children diagnosed with PANDAS are not classed as Special Needs and therefore do not receive provincial or federal funding. Ben’s symptoms include: choreiform movements (repetitive, jerky movements), generalized anxiety, obsessive compulsive disorder, tics (motor and vocal), separation anxiety, sleep difficulties, emotional liability (irritability, aggression, rage, inability to control tears or laughter), and behavioural and developmental regression. He has also experienced seizures resulting in damage to his visual and auditory processing.
Ben has regular appointments with a variety of local specialists that assist in therapies such as: visual and auditory processing, core communications for speech and language; and vision therapy. “The GoFundMe support has been so helpful to support Ben in these therapies,” Terra said.
The awareness of PANDAS has spread around the community. Ben attends school at G.C. Huston Public School in Southampton where a bulletin board has been created to let Ben explain in his own words what it’s like to live with PANDAS.
See also: Southampton family looks to community for support
Ben Luscombe received one of the last panda keychains which were sold alongside bone and mice shapes at the Port Elgin Veterinary Clinic. The clinic also collected donations to help the Luscombes fund out of province treatment for Ben.
