Photo provided to the Times Observer Elliott Bevevino, left, was diagnosed with a rare genetic mutation - neurofibromatosis type 2 - as an infant. His family, including his mom Lindsay, center, are holding a chicken and biscuits dinner next month to raise funds to promote research efforts into finding a cure for the disease.

No parent expects to be told that their child has a rare, serious medical condition.

For Joe and Lindsay Bevevino, whose son Elliot was diagnosed with neurofibromatosis type 2, they’ve turned that news into a force for good.

Last year, a spaghetti dinner and basket raffle raised over $30,000 for NF2 BioSolutions, an organization working to develop treatments for the disorder.

This year, they’re holding a chicken and biscuit dinner at the Eagles Club on Sunday, Oct. 6 from noon to 4 p.m. The event will also include live music – Miranda Wilcox at 12:30 p.m. and Johnny Smooth Duo at 2 p.m.

There’s an event page on Facebook – “Elliott’s Biscuits & Baskets.” Those looking to get docket or make a donation are asked to message on Facebook or email elliottspasta@gmail.com

“NF2 BioSolutions has been such a support for us in so many ways,” Lindsay said. “The organization was founded by parents of kids with NF2 and continues to operate almost solely by patients and their family members. I have established relationships with parents of kids with Nf2 from all over the world. I can be open and honest with them and they know exactly how I’m feeling without having to explain our situation. I am so grateful for their guidance and support.”

She added that the organizations’ commitment to research “gives me hope on my darkest days.” The fundraising target last year was $10,000 and over $30,000 was raised.

“To say we were shocked is an understatement,” she said. “We would love to raise $30k again but we are grateful for whatever number we hit.”

The response from the community has been powerful.

“We have received so much support from the Warren County Community since sharing Elliott’s diagnosis,” Lindsay explained. “As parents, we were hesitant to share his medical status with people outside of our immediate family and friends.”

She acknowledged the chance that Elliott might resent what she’s shared as he gets older.

“It was a difficult decision but one we ultimately made because we desperately need to fund research,” she said. “There is not much that we can do for Elliott due to the limited treatment options available to us.”

Holding an event like this has given Elliot’s parents the chance to do something, to fight back in what can feel like a helpless situation.

“The best thing I can do is to spread awareness about NF2 and fundraise to give those who have the potential to cure this thing the resources to do it,” she said.

According to the Cleveland Clinic Neurofibromatosis Type 2, or NF2, causes “noncancerous tumors to grow on nerves,” often appearing in the brain or spinal cord of children.

It afflicts somewhere between 1 in 25,000 to 1 in 40,000 people.

“Elliott is doing remarkably well for what he has going on under the surface,” Lindsay said. “If you didn’t know that he had NF2, you would never suspect anything is wrong. This will surely change as he and the tumors grow but we are grateful for any ‘good time’ we have.”

He’s hitting his developmental milestones and is “doing everything that a 3 year old loves to do,” she said. “He handles everything he has to endure like a champion and we are so proud of him.”

She described how they’re in “watch and wait” mode currently when it comes to his condition.

“Elliott has 3 small brain tumors that we are monitoring with MRIs and hearing tests annually, for now,” Lindsay explained. “We monitor the status of his retinal lesion by seeing his primary ophthalmologist every 6 months and a retinal specialist every 12 months.”

Treatment options are limited and they have to travel to Boston, Cleveland and Erie for the treatment that is available.

“There are a few repurposed chemotherapy and immunotherapy drugs that have been shown to slow tumor growth a bit in some patients but Elliott is too young to take those medications,” Lindsay said. “Radiation is sometimes used but Elliott is too young and, even if he was old enough, it comes with many risks.”

Surgery is open but always one that comes with risks.

“Because NF2 is caused by a genetic mutation, to fix the underlying problem, our best bet to tackle the issue is gene editing therapy,” she said. “That type of treatment does not exist yet. NF2 BioSolutions is currently working with several labs on genetic treatment research.

“That is why we are fighting so hard to fund this critical research. For a child as young as Elliott, development of gene therapy in a timely manner would mean that he could potentially live a relatively normal life free of many of the awful effects of his genetic mutation.”