Meet our little Lexi, born 31/1/2021 from Hemel Hempstead, Hertfordshire.
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. For some reason (call it parents intuition) we found this hard to accept and had a feeling this was not correct. Lexi is amazingly strong physically, she came out holding her head up and was rolling over at two weeks old. We just couldn't believe that she was not going to walk!
After doing our own research we came across an extremely rare disease called Fibrodysplasia Ossificans Progressiva (FOP). 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.
In short - if Lexi's body receives even a minor trauma (something as simple as falling over) her condition will worsen more rapidly. She cannot have any injections, dental work, cannot have children and any trauma to her body will cause bumps which lead to extra bone growing; preventing her from moving. In addition there is a 50% chance she could become deaf as the extra bone develops through her body up her neck. This disease develops differently in each person and whilst traumas are expected to start around 4 years old some start as babies and the ‘luckier ones’ start later on in life (normally around 8 years old). At the moment Lexi has started to receive minor traumas on her head and neck. Only 1 in 2 million people are affected by this completely random assignment of genes – in simple terms nothing causes it, it can happen to anyone.
After weeks of testing, Lexi's results were sent to a specialist lab in Los Angeles where unfortunately they confirmed she had tested positive. Although it is heart-breaking hearing your baby has a rare disease that will prevent her from living a normal life, it is even worst finding out there is no cure.
THE GOOD NEWS - We have spoken to experts and learnt that there are active clinical trials which are currently very successful. They suspect within the next 4-5 years medicine will hopefully hit the market to help prevent and eventually cure the disease. Of course, as with any clinical trials they need money to help the research and pay for the expert's time. Our aim is 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 to help prolong her time here with us.
From the bottom of our broken hearts we thank everyone for all the support we have already received. We also want to thank you for your help on behalf of little Lexi and all those suffering with this cruel disease.
WE CAN AND WE WILL DO THIS
Love Alex, Dave, Ronnie and Lexi xxxx
If anyone owns/works for any businesses or schools that have an allocated charity amount per year PLEASE PLEASE consider sponsoring us! We are working directly with FOPFriends and can supply charity registration numbers and anything else required to receive a much needed donation. The scientists working to cure this disease are solely funded by the FOPFriends Charity and receive no funding from the NHS.
Please note our fundraising target is on going over the next few years.
Thank you xx