Hi I am Lexi 👋🏼 and I am two years old. I have been diagnosed with an ultra-rare genetic disease called Fibrodysplasia Ossificans Progressiva (FOP). The odds of a person having this disease is approximately one in two million people. There are circa 800 people in the world diagnosed with this disease.

I could go to bed one night and in the morning, I may have lost mobility in parts of my body 😢 It is now mum and dad’s sole priority to keep me safe and ensure they prevents these flare ups that can cause life changing injuries.  

As I cannot have any medicine to prevent my condition therefore the only thing my family can do is to try to keep me as safe as possible. My parents have fought for two years and have finally had permission granted to start building my forever home where they will take care of me 🏡

Many individuals/companies/clubs have asked what this entails and how they can help or donate 🙌🏼

The house is based in Hemel Hempstead and has been designed alongside doctors, occupational therapists and my healthcare team. It will allow me to access all rooms and the garden in a wheelchair. It will also have a wet room bathroom, no slip flooring throughout, curved/soft edges, a lift area, a safe garden space, additional steels in the ceiling for a harness and the all-important wellness room that includes the hydrotherapy pool. The cost of these facilities alone is upwards of £100k. 

Our aim is simple - The better we take care of Lexi and keep her safe in her home, the longer we hope to prolong her life and keep these heart breaking flare ups at bay

Thank you xxx

This page is for those who wish to donate or hold events raising money towards my individual specialised needs. We would like to highlight we are aware so many people have already donated, attended events, and helped raise money towards the research into treatment of FOP. This page enables clubs and organizations to support LittleLexisBigBuild separate from FOPFriends ❤️

Events taking place that you can sponsor here- 

- 4th/5th November 24hr Ski hosted by Tom Luke at Torque Training Bristol Gym (Tom is going to attempt to break the world record for the most distance covered!)


7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

 If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects.  If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.

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