Meet a Man Whose Body Is Turning Into Bone

it's an emotional gathering mothers from around the u.s. and the world are coming together to give each other support way from Australia they all share a special bond their children have a rare and horrific disease that's turning their bodies into solid bone it's called FOP I can move it like up and down I can't like straighten up one morning he woke up and it was just like that only eight hundred cases of FOP are known worldwide we're from Sweden it was once cruelly referred to as stone man syndrome all the muscle in your body slowly turns to bones not stone like all the moms Colette Maguire has seen her 27 year old son Cameron courageously cope with the disorder he likes to do every single thing himself he does not want any help if he doesn't need it amazing considering that FOP literally left Cameron stuck in a standing position I can't sit down at all like I can't like I can't sit in a chair because my legs and my hips toe it's frozen just like yeah I'm from same goes for Jessica Scully her body is solid bone she travels with a mechanical lift get used to it after a while what choice do what I have I I only know this way her caregiver secures her in a harness then carefully hoists her out of bed and lowers her into her wheelchair stop me from being independent it just makes it a little tougher she and fifty other families have come to Orlando Florida posing with their hero dr. Fred Kaplan who discovered the FOP gene with the dynamic discovery when we went from hopeless to hopeful FOP is a gene defect diagnosed at Birth by a crooked big toe adorable Gracie is two years old I love someone rare her mom Leah Terry traveled from Australia she sees what the future will bring as the disease these progresses the neck muscle is usually the first to solidify forcing this five-year-old to turn her entire body to move her head 12 year-old Joe Hollywood is excited to see his good friend Elly are nectar both walk like bacon all but how far can you turn your head as they grow up their mobility will be severely restricted they all share a common goal to remain independent or so people have another day 22 year old Winston Sutherlands arms hips and neck are stuck his mom Gail showed us how FOP has severely contorted his back Winston's jaw is fused shut dr. Corey Crow is a dentist specializing in FOP it'll never open again he's huge like this and you're aware of that right yeah he'll need his back teeth removed so he can eat as many FOP years are forced to do these moms have come together to network to learn tips and tricks and different things that have worked for them and now for the first time there's some real hope clinical drug trials underway that could lead to a successful treatment I'm doing these drug trials for these kids so they don't have to go through what I did dr. Kaplan is optimistic that someday there will be a cure the horizon is no no longer the distant future is right in front of our eyes [Applause] [Music] you [Music]

Channel: Inside Edition

Views: 3,330,335

Rating: 4.940383 out of 5

Keywords: health, florida, Inside Edition, Inside_Edition, IE Health, bones, muscles, rare condition, fop, muscle to bone, fibrodysplasia ossificans, orlando

Id: tCOUTv9basU

Length: 3min 45sec (225 seconds)

Published: Thu Nov 21 2019