TONAWANDA, N.Y. (WKBW) — If you ask father and son duo Anthony and James Parisi what their family is like, they'd probably say they're just like anybody else.
"You know James is a typical five year old boy," James's Dad Anthony Parisi said. "He just graduated kindergarten. He loves playing on the playground. Loves his friends."
In fact, James said there's lot of love to go around. For these two, every adventure means a little bit more since James was diagnoses with Congenial Muscular Dystrophy.
"His disease is rare, there is no cure for it, there are no treatments," Parisi said.
Parisi said once a year the two of them travel to Bethesda, Maryland to see a team of Neuromuscular Specialist at the National Institutes of Health.
"We've done it every year I think the past four years," Parisi said. "Pretty much since he was born."
Parisi said they participate in a natural history study which is a part of the groundwork to develop treatments and ultimately a cure. The plan was to fly out of Buffalo with American Airlines on Tuesday. However, those plans
"They had started the boarding process," Parisi said. "I approached the gate agent and I just asked like I did the first time we traveled to speak with the grounds crew manager. It's brand new, here's some instructions on how to handle it."
Parisi said that's when he was told the chair wouldn't fit.
"I kind of questioned that," Parisi said. "You booked me for this flight. You knew I was traveling with a wheelchair. There were no guidelines or guidance at all on size limits or restrictions or anything like that."
Parisi said American Airlines offered a different one-stop flight on a bigger plane but it just wasn't practical. The risk of damaging James's $10,000 brand new wheelchair at the connection point just wasn't worth it. So, Parisi called the N.I.H and told them they weren't going to make it.
"I mean that's valuable time with the world's best doctors that are studying this particular condition and you know we missed out on the ability to do that," Parisi said.
7 News Reporter Sydni Eure reached out to American Airlines which issued this statement saying:
Thanks for reaching out to American.
“We want all of our customers to have a positive travel experience when they fly with us, including those who travel with wheelchairs and assistive devices. A member of our team has reached out to the customer to learn more about their experience.”
"The infrastructure that we sort of live and understand and that we've built over the years it wasn't built for wheelchairs, it wasn't built for the disabled community," Parisi said.
Parisi said topics and conversations surrounding disability are often taboo and believes more people, law makers and corporations need to come together and advocate for this community.
"These are people at the end of the day and they deserve to be treated like people," Parisi said.
