Rare disease doesn't stop woman from finding love, chasing dreams

FOX 29's Karen Hepp has the story.

- Kathy and Chuck don't have a conventional love story. They met on OkCupid five-years ago, and have shared so many adventures.

Their first date was 11 hours.

"It just seemed like someone I've known forever- there was an immediate connection," Chuck explained.

But, getting down the aisle wasn't an easy journey. Kathy has a very rare disease, and just moving is difficult.

"I was diagnosed with fibrodysplasia ossificans progressiva (FOP). It's a rare disease that basically creates a second skeleton in your body. I don't have four legs or four arms but I have extra bone in legs and arms back and jaw. Wherever there's trauma, bone grows over that area and immobilizes it," Kathy explained.

While it's true Kathy moves very slowly, she refuses to let obstacles stop her from living a full life.

She loves fire trucks, and has them everywhere, she knew being a firefighter was out of the question but, figured out something she could do.

"I wanted to be a dispatcher since I was in 9th grade of high school," Kathy said.

Kathy's good at making her goals a reality, and putting herself out there.

She graduated high school, and college, and then got her dream job as an Atlantic City dispatcher. She surrounded herself with wonderful pets, but, wasn't sure she'd find romantic love.

"I wanted a dog and a parrot because they say that a dog is man's best friend, and a parrot I could talk to forever, but luckily I wound up with two birds, five cats, bearded dragon and a husband," she laughed.

The couple found true love against the odds.

Kathy is funny and witty, and Chuck doting and loving. They're soulmates.---

"Honestly for me it's just been amazing she's my heart, anything I need to do to take care of her I will I'm happy to do it," Chuck said.

They truly are a team creating solutions to every challenge, including a remote for the door, a chair to help Kathy get to work, and when her hands got stiffer, she learned to type upside down- faster than most folks right-side up.

Chuck bustles around Kathy making sure she has what she needs and they can't help but, smile.

Probably Kathy's only regret is she can't drive now. She misses that independence. Neither of them knows what' next on their journey, all they know is they want to take it together.

"We can't worry of what's about a year from now, we worry about today and this week, we make it work, Kathy said.

Kathy's disease is so rare, only 800 people have been diagnosed around the world. 

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