Hemel parents launch petition to help dedicate funding for rare condition that is turning their daughter's body to stone

Alex and Dave have been raising awareness of the incredibly rare disease Fibrodysplasia Ossificans Progressiva

Monday, 4th October 2021, 1:37 pm

The parents of an eight-month-old baby girl from Hemel Hempstead, who has been diagnosed with a rare and incurable condition that turns her body to stone, have launched a petition to help dedicate funding for research into the disease.

Alex and Dave Robins launched the petition to raise awareness of Fibrodysplasia Ossificans Progressiva, or FOP, and help dedicate funding for research into the disease as funding is not currently available on the NHS.

The condition means Lexi, who was born on January 31, 2021, cannot have any injections, vaccinations or dental work and if body receives even a minor trauma (something as simple as falling over) her condition will worsen more rapidly.

Lexi

This disorder gradually replaces muscle and connective tissue - such as tendons and ligaments - with bone.

This condition leads to bone formation outside the skeleton, extra-skeletal or bone, that restricts movement - many refer to this as their body turning to stone.

There is also a 50 per cent chance she could become deaf as the extra bone develops through her body up her neck.

Alex and Dave, who are also parents to three-year-old Ronnie, have been raising awareness of the incredibly rare disease to help health experts and so other parents can look for any potential signs.

Lexi and her big brother Ronnie

Alex said: "The day after little Lexi was born we noticed her big toes did not look the same as everyone else's and in addition the movement in her thumbs looked a little odd.

"In April 2021, after x-rays we were told she had bunions on her feet and that her thumbs were double jointed.

"A few weeks later we were informed Lexi was missing the top bone in each of her big toes and her thumbs were fused (meaning her thumb is just one long bone and she has no knuckle).

"At this point we were incorrectly told that it was possible she had a syndrome and it was unlikely Lexi would ever walk."

Alex with Ronnie and Lexi

The family had a feeling this was not correct and after doing their own research they came across the extremely rare disease, FOP.

After weeks of testing, Lexi's results were sent to a specialist lab in Los Angeles where unfortunately they confirmed she had tested positive.

Alex said: "This disease develops differently in each person and whilst traumas are expected to start at around the age of four, some start as babies and the ‘luckier ones’ start later on in life.

"But no two cases are the same and it is a really rare disease which is why we want to raise awareness of it.

Alex and Dave with Ronnie and Lexi

"Lexi is brilliant, she is doing really well, and is always smiling. She had a few small bumps on her head, but they have gone, which is positive."

It is not known what causes the condition, and the scientists working on the cure are solely funded by the FOPFriends Charity.

The charity, which receives no funding from the NHS, aims to raise funds to find effective treatments for the rare genetic condition and supports people living with FOP and their families.

After finding out that there are active clinical trials that are proving to be positive, Alex and Dave set up a fundraising page, to help raise funds to get this medicine on the market quickly and ensure Lexi can receive it in the early stages of her life.

They have raised over £100,000 to help try and fund research, trials and treatments.

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FOP Friends, supports FOP research at Oxford University. The petition is calling on the government to provide funding to support the research into a treatment for FOP.

Alex said: "We want to raise awareness of FOP and from that receive NHS funding for the research.

"The response to the petition has been amazing, in less than 24 hours we have 8,202 signatures.

"We are really grateful for all the support we have received, and we are now hoping to take this to the next level."

The petition now has 87,882 signatures (October 4) - at 100,000 signatures, this petition will be considered for debate in Parliament. To sign the petition visit: petition.parliament.uk/petitions/590405.