Little Lexis Big Build

I’m three years old, and I’ve been diagnosed with an ultra-rare genetic condition called Fibrodysplasia Ossificans Progressiva (FOP). The odds of someone having this disease are approximately one in two million, and there are only about 800 people in the world currently diagnosed with FOP.

What makes my condition so challenging is that I could go to bed one night and wake up the next morning having lost mobility in parts of my body 😢. It’s now my mum and dad’s top priority to keep me safe and do everything they can to prevent the flare-ups that can cause life-changing injuries.

Since there is no medicine or treatment to prevent my condition, the only thing my family can do is create a safe, secure environment for me. After two years of fighting, my parents have finally been granted permission to build a forever home where they can take care of me as I grow. 🏡

How You Can Help

Many kind individuals, companies, and clubs have asked how they can support us, donate, or get involved 🙌🏼. Here’s what the project entails:

The house, located in Hemel Hempstead, has been specially designed with the help of doctors, occupational therapists, and my healthcare team. It will be fully accessible, allowing me to move around all rooms and the garden in my wheelchair. The home will also feature:

A wet room bathroom

Non-slip flooring throughout

Curved/soft edges to prevent injuries

A lift area for accessibility

A safe garden space

Ceiling steels to support a harness

And most importantly, a wellness room with a hydrotherapy pool

These specialised facilities alone will cost upwards of £100,000.

Our goal is simple: The better my family can take care of me and keep me safe in our home, the longer we can hope to prolong my life and minimise these heartbreaking flare-ups.

How Donations Will Be Used

This page has been set up for those who wish to donate or hold events to raise money toward my individual, specialised needs. We are truly grateful to everyone who has already donated, attended events, or raised money for the research into treatment for FOP—it means the world to us.

Love, Lexi xxx

Important Notes on Donations

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the charity’s core operating costs.

If insufficient or surplus funds are raised, they will be used to support my needs in line with Tree of Hope’s charitable objectives. If any funds cannot be used for my specific needs, they will be transferred to the general charitable purposes of Tree of Hope.

Thank you so much for taking the time to read my story. My family and I deeply appreciate your support in helping to create a safe and loving home for me. Together, we can make a real difference.