Linslade family’s race to find FOP cure for Ellis’s rare condition

Ellis's smile is infectious and he loves having fun with his friends.
Ellis's smile is infectious and he loves having fun with his friends.

A brave Linslade boy is battling a rare condition which “turns those affected into statues”, as his parents plan to tackle the Great North Run in his honour.

Ellis Grant, eight, of Bewdley Drive, was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) – or Stone Man Syndrome – in 2015, a condition that progressively forms a second skeleton that imprisons the body in bone.

Ellis and his big sister, Hope. They love playing Lego together.

Ellis and his big sister, Hope. They love playing Lego together.

FOP, which affects 45 people in the UK, develops along the trunk and limbs of the body, replacing healthy muscle with bone, the bridges of bone restricting and preventing movement.

Now, Ellis’s mother, Suzanne, is on a mission to help find a cure, hoping to raise awareness about the condition so children can receive an early diagnosis.

Suzanne, 39, who works at Nationwide, Milton Keynes, said: “Ellis will become frozen in his own body over time.

“He knows that his bones are different to other people’s so he has to be careful – he doesn’t know the full story, as he is young and we don’t want to scare him.

Ellis, Suzanne, and Woody. Ellis has watched Toy Story around one hundred times!

Ellis, Suzanne, and Woody. Ellis has watched Toy Story around one hundred times!

“At the moment he has a neck fusion and a fusion in his achilles, so he can’t look up or down and walks quite stiffly.

“He can’t be knocked or bumped, as he can get flare ups and his body can decide to build more bone.

“Our family, Ellis’s friends, and Greenleas Lower School have all been amazing and now I hope to raise £600 for the charity FOP Friends by doing the Great North Run in September.

“We are told a cure is within Ellis’ lifetime and FOP Friends is racing against the clock.

Ellis and his toes. FOPFriends say: "Turned in toes means check for FOP!"

Ellis and his toes. FOPFriends say: "Turned in toes means check for FOP!"

“The average lifespan for someone with FOP is early 60s and although movement will be reduced, at the moment there are three drugs for FOP in clinical trials around the world.

“Some days are harder than others; I remember being in the car and not being able to look at Ellis - if I didn’t look at him it wasn’t real.”

Luckily, the family have had a wealth of support from the Leighton Buzzard community. Nationwide, High Street, has recently held a toy sale in support FOP Friends, while Ellis has a classroom assistant who watches him and helps with his schoolwork.

His childminder, Sally Jay, also has a special soft football that Ellis can play with, as well as a hot tub which Ellis and his sister, Hope, 10, can use.

Now, plans are underway for the Great North Run on September 10, which Suzanne, and Ellis’s father, Rob Grant, 42, are running for FOP Friends, describing how, thanks to the charity, Ellis has met children from across the world who have the same condition.

Suzanne said: “Ellis just takes everything in his stride and is so positive - I wouldn’t describe him as suffering.

“He loves being with his friends and he has a fun, infectious character.

“His favourite film is Toy Story and he tells me he wants to be a film director - although that could change tomorrow!

“He has loads of hobbies, from video games to horse riding at Riding for the Disabled, Great Gaddesden.

“Any donations could really make a difference so we could find out why the body builds bones so quickly; it could give Ellis a chance of a having a normal body.”

> http://uk.virginmoneygiving.com/SomeoneSpecial/FOPfriendsofEllis