A Leominster, Massachusetts family is working to spread awareness of a rare form of muscular dystrophy.
A person has a 1/50,000 chance of getting Friedreich's ataxia, but the Mullaney family has a son and a daughter who were born with the rare disease that makes normal tasks like walking, typing and moving extremely difficult.
While the disease has set them back physically, the family says it has propelled them forward emotionally and they want to inspire people to cherish every single day.
Joey is like most 23-year-old young men. He is studying hard as a graduate student at Emerson, playing NBA 2K with his twin brother, and getting a pump in at the gym. Except, Joey has Friedreich's ataxia and it has him bound to a scooter.
“Getting used to how like people look at me when I'm in the scooter, that was tough,” he says. "Just getting changed and showering, all that, like that stuff's hard."
Joey’s older sister Kaela was diagnosed with the rare form of the disease first. She explains their disease as a “neuromuscular degenerative illness that essentially affects your heart, the pancreas, nerves and muscles.”
She says it’s both a blessing and a curse to go through it with your sibling.
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“I can’t imagine what’s worse,” Kaela says, “having to be the first or having to know what's coming next.”
Joey says the disease that attacks your nerves and muscles cutting your life span short has given him a new outlook on the meaning of life.
“Overall it’s made me a better person,” Joey says. “Just knowing I’m not gonna be on this earth forever but while I’m here make it work.”
Joey is giving speeches to the community, writing a book and blogging to let people in on his darkest and lightest moments.
Unlike her brother, Kaela prefers to stay behind the scenes.
She has gone her whole life promoting a don’t-feel-bad-for-me attitude.
“Pity is a really awful feeling,” she says. “so it's always been important for me to do things on my own.”
With the cards stacked against them though, Kaela is glad her brother is getting out to spread awareness.
Joey says he is trying to find the meaning in life by using his struggle to help others.
“My take away is to never take yourself too seriously, there's always something to laugh about."
