Fundraiser organized for girl with rare disease in need of wheelchair accessible van

LONG BEACH, Miss. (WXXV) — Brighton is a 3-year-old girl from Long Beach who has a rare, mitochondrial disorder and is in need of a wheelchair accessible van.

Brighton was born with Leigh Syndrome, a rare, progressive, and terminal mitochondrial disease that affects her muscles, brain, and ability to breathe on her own. She depends on a ventilator to breathe, has a trach and GJ feeding tube, and requires 24/7 care.

Due to her growing needs, Brighton’s mom and dad – Kelly and Josh – are looking to purchase a wheelchair accessible van for her, as their current SUV limits Brighton’s ability to get up and go, and poses many issues to her safety long term.

Kelly says it takes around 30 to 45 minutes to load and unload Brighton, meaning a simple trip to the grocery store is just not possible. With the van, they could wheel her in and out in just minutes.

A GoFundMe was organized by Brighton’s family so that they could purchase the van from their family friend. Kelly says the average wheelchair accessible van costs around $85,000, but they are purchasing this one for just over $30,000 with the help of donations.

We spoke with Megan Capuano who is selling the van to the Price family. Megan’s daughter Colbi sadly passed away in July of this year. She says Colbi and Brighton were “besties.”

Megan is now selling the van to Brighton’s family, noting that “It’s freedom for them,” and “She (Brighton) is going to experience life more than ever.”

Brighton will be able to experience all the fun things in life with less limitations, like her favorite place — Disney World, where she is going for her fourth birthday.

Brighton’s family is beyond grateful for the support they have received so far.

If you are interested in donating to Brighton’s GoFundMe, click here.