Mum raises awareness for FOP to help five-year-old Alanna

Stephanie Edwards, from Bridgwater, is trying to help her daughter Alanna who was diagnosed with Fibrodysplasia Ossifican Progressiva (FOP), an illness that “turns muscle to bones” and for which there are only 1000 known cases around the world.

Funds for the research are raised through the FOP Friends charity and then reach the University of Oxford.

Stephanie also tries to raise funds to help the research through raffles and other charity events.


Five-year-old Alanna

She said: “Obviously she is really young so she doesn’t understand completely what’s going on. She gets on with her life, she is a little warrior.

“The diagnosis was absolutely devastating and it’s heartbreaking to find out your child has this condition.

“I don’t like to think about the future, I think about the ‘now’ and I want to create memories."

Stephanie also said the slightest knock, bump, or fall can trigger a flare-up of Alanna's condition.
Flare-ups present as unusual swellings on the body and can be very painful and where the tissue becomes damaged, it ossifies.

She also added: "As much as I'd love to wrap my child in cotton wool to keep her safe, there is only so much you can do to protect them.

"The diagnosis is devasting but she is just a child, and I want her to live life to the fullest.

"For us, it's about making memories now while Alanna is able but in the safest possible way protecting the mobility she still has.

"As hard as it is we try not to think about the future too much and what life could be like for Alanna, we prefer to focus on the now and worry about things if and when they happen."


Alanna and her brother Cody, 6

FOP, as explained on the charity’s website, is one of the rarest and most disabling genetic conditions known to medicine. It affects around one in a million births.

It is characterised by shortened big toes and unusual swellings across the body.

It is a very rare genetic connective tissue disorder characterised by the abnormal development of bone in areas of the body where the bone is not normally present (heterotopic ossification), such as the ligaments, tendons, and skeletal muscles.

Malformed big toes, combined with swellings are also classic signs of the rare genetic condition FOP.

Stephanie also explained the main difficulties her daughter needs to face every day.

She said: “Alanna cannot ride a normal bike as this is far too dangerous and any trauma to her body could trigger her condition.

“Alanna uses a specialist pushchair/wheelchair because tiredness and overexertion can also trigger an FOP flare-up.

“When she was younger Alanna used a walking aid because limited mobility in her upper arms meant she couldn't pull herself to stand independently.

“She lacked balance and would have lots of falls, this knocked her confidence. The walker helped her to feel safe, build core muscle strength and take those independent steps. Alanna did not walk unaided until age three.”


 

Her friend Rachel Winnard is helping her too, hoping to fight a condition that can not be cured through the NHS.

Rachel said: “Steph’s little girl Alanna has a very rare illness called fibrodysplasia ossifications progressive.

“It’s a very debilitating illness where muscle turns to bones there are only 1000 known cases worldwide.

“She just turned five, she’s absolutely amazing. She's had to learn to do things her way, but she tries her best not to let it stop her.

“She does have a wheelchair as she can't walk very far as it makes her tired. She's such a happy little girl.

“The problem is there is no cure or help on the NHS and I'd love to be able to try and raise awareness about this horrible disease because the more awareness we raise, the fewer children born with FOP will have unnecessary operations and go through what Steph went through when Alanna was a baby.”

Anyone wishing to donate and support the research can visit www.fopfriends.com