Little Lexi's Big Christmas Raffle is raising money for charity - inspired by Hemel Hempstead baby girl with incurable condition

Scientists working on the cure for Fibrodysplasia Ossificans Progressiva are solely funded by the FOP Friends charity

Wednesday, 3rd November 2021, 5:29 pm

The parents of a 10-month-old baby girl from Hemel Hempstead, who has been diagnosed with a rare and incurable condition that turns her body to stone, are raising money to support research into Fibrodysplasia Ossificans Progressiva (FOP).

Alex and Dave Robins are raising money for FOP Friends, the charity aims to raise funds to find effective treatments for the rare genetic condition and supports people living with FOP and their families.

FOP affects just one in two million people, it is not known what causes the condition, and the scientists working on the cure are solely funded by the FOP Friends charity.

Sign up to our daily Hemel Today newsletter

The i newsletter cut through the noise

Lexi

Alex and Dave's daughter Lexi, who was born January 31, 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.

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.

Property management company We Stay Group is supporting the family's fundraising for FOP Friends by launching Little Lexi's Big Christmas Raffle.

Raffle tickets are £10 each and proceeds will be donated to FOP Friends.

The winner will receive a two night stay for up to 14 people from December 27 to 29, at The stunning Old Rectory, in West Lancashire, complete with arrival graze board and access to a private hot tub, gym and family cinema room.

The raffle launched on Monday, November 1, and closes on Monday, November 15.

Alex said: "Please enter our amazing raffle and share it with friends and family!

"This is an incredible way of helping us raise funds for FOP Friends and help get our girl and everyone else with FOP that all important cure."

Last month, the couple launched a petition to help dedicate funding for research into the disease.

Read More

Read More
Hemel parents launch petition to help dedicate funding for rare condition that i...

Alex said: "The support for the petition was amazing and we got the 100,000 online signatures we needed and we are now waiting on a date from parliament.

"Lexi has had a few flare ups on her neck and head and we do have an appointment to see a specialist at Great Ormond Street Hospital in January.

"She is doing well and is a happy baby, she is learning to crawl and we are trying to stop her from doing that, so she doesn't move too far and too quickly."

To enter the raffle visit: westaygroup.com/raffle-for-lexi.