The pregnancy and prenatal testing had all been normal.

But when he was six weeks old, they noticed that one of his eyes didn’t track objects.

That led to a devastating diagnosis – Neurofibromatosis Type 2, or NF2.

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

Photos provided to the Times Observer Elliott Bevevino is two years into a fight with a rare disease - Neurofibromatosis Type 2, or NF 2. His family is holding a spaghetti dinner on Oct. 8 to raise funds for a non-profit that funds research initiatives in the search for a cure to the disease.

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

“You would never know anything was wrong if we didn’t share his diagnosis,” his mom, Lindsay, said.

A spaghetti dinner and basket raffle with live music is scheduled for Oct. 8 from 1 p.m. to 6 p.m. at the Pleasant VFD Social Hall to raise funds aiming at finding a cure for NF2. Since the diagnosis, Elliott’s family has been working to support NF2 BioSolutions, a non-profit founded by NF2 patients and families that funds research initiatives.

Tickets are $10 for adults and $5 for kids.

Anyone looking for tickets or to donate is asked to email elliottspasta@gmail.com.

Elliott’s case is considered “spontaneous.”

“It was a huge shock,” Lindsay said, “as we had never even heard of this disease until they told us we needed to test him for it.”

Those initial warning signs at six weeks set off a round of tests that started in Warren, then to Erie with consults to Philadelphia and Cleveland.

Both of those consults wanted a better look, thinking that Elliott may have a pediatric form of eye cancer.

“We went to Cleveland days later and had his first sedated eye exam during which he was diagnosed with a retinal hamartoma, a lesion in the eye blocking his optic nerve,” Lindsay said. “He has no central vision and relies on peripheral vision in his left eye along with his so far unaffected right eye to navigate.”

The next step was genetics testing, one of which was NF2.

“We received the phone call that he is positive for NF2 on July 21, 2021 when he was just 6 months old,” she said. “It is extremely rare for a child to be diagnosed with NF2 this early. The doctors say that if his hamartoma wasn’t so large or smack in the middle of his central vision, we probably wouldn’t have known for some time.”

A neuro-oncologist from the Massachusetts General Hospital told the family that Elliott’s MRI showed tumors on the auditory nerves of his brain.

“While these tumors are a hallmark of NF2 and not unexpected, we were devastated to learn that they were already there at such a young age,” Lindsay said.

His parents know what Elliott is up against.

“Patients with NF2 lose hearing, eyesight, mobility and eventually their lives as the disease progresses,” Lindsay said. “Individuals with NF2 have multiple tumors and face constant complications. Current treatments are limited, risky and generally ineffective.”

In addition to the lesion in his eye, two additional tumors have been discovered. Those tumors will grow with him.

But Elliott is still “pretty amazing.”

“It’s pretty amazing how his brain has kind of rewired itself to deal with his low vision in the left eye,” Lindsay said. “His eye is remarkably straight for now considering how little input it receives.”

She said it’s hard to know he’s feeling given his age but “so far his brain tumors haven’t affected his life in any way as far as we know.”

His hearing tests have been normal and, she said, “he will chat your ear off and never stops moving!”

“Sadly, this will not always be the case,” she added. “Almost all NF2 patients lose their hearing by the time they are teens or 20’s. Disfigurement in the form of facial paralysis, eye paralysis, vocal cord paralysis and motor issues are prevalent and will be more visible as the disease progresses.”

They know that his age and current status put him in the “most likely severe” but “no one can tell us what to expect as this disease is so rare and every case is so different.

“The uncertainty is one of the hardest parts. We don’t know how much ‘normal’ time we have with our little guy so we try to soak it up as much as we can,” she said. “We just take it one day at a time!”

The community support to this point has been strong.

“We have been absolutely blown away by the love we receive from our little community,” Lindsay said.

And it’s clear that Elliott’s parents bring strength and resilience to their care of him.

“We will never stop fighting for our baby boy,” Lindsay said. “He deserves a long and healthy life and to live up to all of the potential we see every day. He’s so smart, funny, strong, sweet and curious. I know he will do big things in this life if he’s given the chance!”