Lexi was born, seemingly, a very happy and healthy baby in January 2021. After the initial euphoria of having a beautiful baby daughter wore off, we did notice that Lexi’s big toes looked malformed on both feet.

After going through ‘routine’ check-ups with a number of health professionals, we were given various prognosis, from bunions through to Lexi never being able to walk again!

We did our own research and this led us on a journey that we never thought we would experience. Lexi has an ultra-rare genetic condition called Fibrodysplasia Ossificans Progressiva (FOP), finally confirmed via a specialist blood test.

FOP is one of the most rare and debilitating conditions known to medicine. There are no treatments or cure.

It effects 1 in every 1.4m people and does not discriminate; it can be found in males and females regardless of race or social environment.

FOP causes our daughters’ muscles, ligaments and tendons to turn to bone, eventually leaving her completely immobile.

FOP can be triggered by trauma (trips and falls), dentistry work, immunisations and live viruses, so we have to spend our time carefully navigating these triggers.

For an FOP patient, their dwelling is so much more then a home. It is to be a place of safety, exercise, independence, privacy and much more. We were in our ‘forever’ home and had worked hard to achieve this, but it was a 15th century cottage and just not safe for our little girl to reside.

We sold our home and embarked on building a bespoke property for Lexi. The property is to have wheelchair access, additional steel for future harness needs, minimised trip hazards, soft but slip resistant flooring, a carers annex and a hydro-therapy pool; where Lexi can safely exercise in an environment that takes pressure from her body (in water) but still provides great respiratory exercise for her.

To provide this dwelling was not cheap, especially as we had not spent years planning for this.

Once Variety, the Children’s Charity learned about Lexi and her ‘big build’, they stepped in to support us and gave us the opportunity to get the correct hydro-therapy pool for Lexi. This has been huge comfort to us.

We live every day hoping for a treatment / cure for Lexi, but also planning for a life where there is none.

As parents, we want to work hard now to provide compound benefits to Lexi’s quality of life now and in the coming years.

It is a difficult and lonely journey, but organisations such as Variety, the Children’s Charity let you know that people do recognise you and truly care.

We are grateful every day for Lexi. Her story is not written yet.