Photo provided to the Times Observer Elliot Bebevino (left) was diagnosed as a toddler with a rare genetic mutation called Neurofibromatosis Type 2. Next month, his family, including his mother Lindsay (centre), are hosting a chicken and biscuit dinner to raise money to further research into finding a cure for the disease.
No parent expects to be told that their child has a rare and serious medical condition.
For Joe and Lindsay Bebevino, whose son, Elliot, was diagnosed with Neurofibromatosis Type 2, they turned the news into a force for good.
Last year, a spaghetti dinner and basket raffle raised more than $30,000 for NF2 BioSolutions, an organization working to develop a cure for the disorder.
This year, a chicken and biscuit dinner will be held at the Eagles Club from noon to 4 p.m. on Sunday, October 6. The event will also include live music, with Miranda Wilcox performing at 12:30 p.m. and the Johnny Smooth Duo at 2 p.m.
There is an event page on Facebook called “Elliott’s Biscuits & Baskets” and anyone wanting to get the docket or make a donation can message us on Facebook or email us at elliottspasta@gmail.com.
“NF2 BioSolutions has been a great support to us in so many ways,” Lindsay says. “The organization was founded by parents of children with NF2 and continues to be run almost exclusively by patients and their families. I have built relationships with parents of children with NF2 from all over the world. I can speak to them openly and honestly, and they understand exactly how I feel without me having to explain our situation. I am so grateful for their guidance and support.”
She added that the research efforts of these groups “give us hope in our darkest days.” Last year’s fundraising goal was $10,000, but more than $30,000 was raised.
“To say I’m surprised is an understatement,” she said. “I’d love to raise $30,000 again, but I’m grateful we reach whatever number we reach.”
The response from the community was strong.
“We’ve received so much support from the Warren County community since sharing Elliot’s diagnosis,” Lindsay explained. “As parents, we were hesitant to share his condition with anyone outside of our family and friends.”
She acknowledged that as Elliot grows up, he may resent what she shares with him.
“It was a difficult decision, but we ultimately made it because we desperately needed the research funding,” she said. “With limited treatment options, there’s not much we can do for Elliot.”
Hosting an event like this gave Elliot’s parents a chance to fight back and do something in a situation where they felt powerless.
“The best thing I can do is spread awareness about NF2 and raise funds to provide treatment resources to those who can potentially cure this disease,” she said.
According to the Cleveland Clinic, neurofibromatosis type 2 (NF2) is a disease that causes “noncancerous tumor growths on the nerves,” and often appears in children’s brain and spinal cord.
It affects between 1 in 25,000 and 1 in 40,000 people.
“Elliot is doing remarkably well considering what’s going on beneath the surface,” Lindsay says. “If I didn’t know he had NF2, I would never have suspected anything was wrong. Things will certainly change as he and his tumor grow, but we’re grateful to be able to have our ‘fun times’.”
He’s hitting developmental milestones and “doing all the things that 3-year-olds love to do,” she said. “He’s handling everything he’s had to endure like a champ and we’re so proud of him.”
She explained that they are currently in a “wait and see” mode regarding his condition.
“Elliot has three small brain tumours and is currently being monitored annually with MRIs and hearing tests,” Lindsay explained. “He sees his ophthalmologist every six months and a retina specialist every 12 months to monitor the progress of any retinal lesions.”
Treatment options are limited and people must travel to Boston, Cleveland or Erie to receive care.
“There are some repurposed chemotherapy and immunotherapy drugs that have been shown to slightly slow the growth of tumours in some patients, but Elliot is too young to take those,” Lindsay said. “Radiation therapy is sometimes used, but Elliot is too young and even if he was old enough, it carries a lot of risks.”
Surgery is possible, but there are always risks involved.
“Because NF2 is caused by a genetic mutation, gene editing therapy is the best bet to solve the underlying problem,” she says. “No such treatment exists yet. NF2 BioSolutions is currently collaborating with several laboratories in gene therapy research.”
“That’s why we’re fighting so hard to fund this important research – for young children like Elliot, a gene therapy developed in time could mean they can live relatively normal lives, free from many of the terrible effects of their genetic mutation.”
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