How People With FOP Live As Disease Turns Bodies Into Bone

it's a reunion of old friends they all have one of the rarest diseases on earth my jaw is completely fused my leg is fused at the hip that's the limit of motion of God their condition causes their muscles ligaments and tendons to become bones turning their bodies rock-hard we're turning to a human statute we can't move the three friends suffer from a disease known as FOP there are only 700 known cases in the world almost half of them are in the u.s. Ashley curfew lives outside Atlanta Georgia as a toddler her arm was amputated after doctors misdiagnosed her with cancer they missed the tell-tale signature of FOP disease a crooked big toe now her muscles have started hardening into bone I cannot move this arm away from my body it's like superglue to my side my upper arm because it does not move her neck and spine are now fused five years ago Ashley's leg got stuck in this bent position it stuck in that thigh his rock-hard bone a four inch platform shoe enables her to walk the 30 year-old showed us how she uses a drawer handle to take off her pants a convenient closet doorknob helps her get them back on this is it for removing in the shoulders Patrick doors jaw is nearly frozen shut just enough to talk his mom Gretchen a pediatric nurse was heartbroken when he was diagnosed he was 17 and big and burly and the next thing you know he's in such severe pain she watched helplessly as his muscles and joints turned to solid bone very intense swelling very intense pain at 52 Nancy Sando is one of the oldest living people with FOP she inches her way toward the bed her body is stiff as a board God has given me the ability to find the joys and the little things in life it's a tremendous hardship FOP is a is a devastating disease dr. Frederick Kaplan of the University of Pennsylvania is the leader in the fight against the disease and personally sees to every case we adored Nancy and Ashley and Patrick I mean they're all testimonies to the human spirit they're shining examples of what human beings can do when they're faced with such incredible adversity with the reunion set getting their would prove quite an undertaking Nancy and her caregiver left Michigan's Upper Peninsula driving three hours in her minivan Ashley gets a little help down the jetway in Atlanta then walks on board her flight and takes her seat Patrick boarded his plane in Philadelphia and when he found his seat the 30 year old accountant enjoyed a drink with his own ingenious invention I've got a lot of pride I have a lot of ability the three friends finally made it to Detroit and settled in at their hotel they share techniques for doing all the things we all take for granted they gathered by the pool Ashley took a refreshing swim dinner proves the most challenging of all since Patrick and Nancy's jaws are all but fused shut they first used their lips to mash the food against their teeth then push it through gaps and everywhere they go they draw inspiration from each other it helps to know that they're not alone [Music] the dance party is in full swing the DJ gets the crowd moving shaking and spinning but this is a dance unlike any you've ever seen the partygoers were all born with a rare disease called FOP it's caused by a gene defect that is gradually turning their bodies into rock-hard bone they call themselves FOP ears they're also known as the human statues or petrify people names they do not particularly like 59 of these brave souls have come from across the country to Orlando Florida for their 25th annual convention there are only eight hundred such people alive in the world today afflicted with FOP we're human beings turning physically into human statue 32 year old Ashley Kerr peels arm was amputated her leg neck and spine are now rock-hard bone Ashley came with her family getting into the pool isn't easy Ashley's game for playing splish Splash most heartbreaking of all is seeing the devastating effects on young children it begins with FOP signature diagnosis a crooked big toe the youngest FOP are at the convention is 3 year-old William Ellicott from Oregon's Williams right arm is permanently stuck in this position his back is riddled with bone growth his mom Katrina says most people don't understand what's wrong with her little boy do you break an arm or so I do a lot of explaining you look good Chris that looks really nice 23 year old Chris Michelle from New Jersey shows off a daring Victoria's Secret bikini sexy at 57 John reading is one of the oldest of the conventioneers in attendance he even crafted a spoon with a golf club to make it easier to eat eighteen-year-old Briana LaChance has to force food into her mouth because her jaw is fused shut they can't open my mouth dr. Fred Kaplan is the world's leading expert on the disease treating these patients requires scientific knowledge and a lot of heart getting ready for the convention is a big undertaking Ashley's mom helps slip on a new robotic arm then it was time to join the party there they were her fellow patients having a great time on the dance floor Chris had changed out of her bikini and was wearing a zebra pattern cocktail dress and three-year-old William he was dancing up a storm and making new friends having a great time comforted by the fact that he was not alone [Music] it's a wedding day this bride has always dreamed about but walking down the aisle is a struggle those Val's have an extra special meaning the vows show that you know the things that we've gone through already and the things that we're gonna be continuing to go through Cathy Ford has an incurable disease called FOP which is gradually turning her body into bone as hard and solid as stone she can't move her arms Kathy's jaw is lauded as is her mouth and then her legs and hips are also locked she never thought she would meet mr. right I didn't think anybody would be willing to deal with my disease but none of that matter to Chuck they met on the dating website OkCupid comm in 2013 and he popped the question six months later she's got the most beautiful heart mind soul and that's what I fell in love with ready shock tends to all of Kathy's needs the 30 year old works as a 911 dispatcher and lives an act of life from vacuuming to preparing lunch since Kathy can't bend her body getting into a car is a challenge but they have the routine down and relish a beautiful day on the boardwalk in Atlantic City there are only 800 known cases of FOP worldwide and this is another victim of this cruel disease looking at a beaming Holly lip-read walking down the aisle at her wedding in 2012 you really couldn't tell that she had also been diagnosed with FOP it kind of felt like a fairy tale coming true I love her with all my heart and I believe were like two peas in a pod we'd probably be lost without each other but just one year later her mobility was just about gone her hip knee and leg are locked marriage is hard enough but then throwing Ethel P into the equation with it obviously it makes things a lot more difficult there you go thank you what a contrast to the bride who walked down the aisle and danced in her wedding gown now every move is a struggle how's it feel her husband Tim brushes her hair Kathy who works for the family construction business has gripper situated around her house to help her pick up dropped items she also has a device to help her get socks on a daily challenge a lot of times what that's all can you just have to laugh because otherwise you want to cry after North Haven Connecticut home Tim is building a ramp for the day when walking becomes completely impossible together we're stronger if we can handle this can pretty much handle anything both couples take one day at a time proving love can conquer all you you

Channel: Inside Edition

Views: 2,093,690

Rating: 4.9426546 out of 5

Keywords: IE flashback, inside edition, inside_edition, ie health and wellness, fop, disease, health, bone, rare, doctors, florida, skeleton

Id: RpBDIlfU2VM

Length: 9min 15sec (555 seconds)

Published: Sat May 16 2020