Dave Almond (Rotary Club of Chelmsford) will be interviewing Alex Robbins of Hemel Hempsted, mother of Lexi, on www.chelmsfordcommunityradio.com on Sunday 19th December 2021 between 10.00am and 12.00pm
Finding a Cure for FOP
Fibrodysplasia Ossificans Progressiva
It's every parent's worst nightmare to find out that their new-born child is diagnosed with a rare disease that's deemed incurable. But in Lexi's case, new treatments are close to being available and her parents are asking for support to help Lexi and other children in the same circumstance stand a fighting chance at life.
The disorder gradually replaces muscle and connective tissue (such as tendons and ligaments) with bone. This in turn restricts movements and leads to severe physical disability. Many refer to it as turning their bodies to stone. This condition is accelerated by any minor trauma such as falling over. Only 1 in 2 million people are affected by FOP but it is genetically random. Lexi and many others like her cannot have any injections, dental work or have children, as any trauma to the body will lead to extra bone growing, preventing her from moving. This condition often starts as babies with the 'luckier ones' starting later in life, up to 8 years old.
Whilst Lexi was born with deformities affecting her toes and thumbs, she is currently well and thriving. However, as she grows and matures the impact of the condition will become more pronounced.
The good news is that privately funded research into the condition has started, and the hope is that a cure will be found in the next 4 - 5 years. However, funding is required for this.
FOP Friends (www.fopfriends.com) is a trust registered as a charity no.1147704, which aims to promote ongoing research into FOP and its related conditions by supporting current and future research projects, as well as supporting familie impacted by FOP.
FOP Friends is recognised by HMRC for Gift Aid and its accounts/financial returns are up to date. It has received no funding from government contracts or grants.
Alex and her family have remained strong and positive and have put all their efforts into promoting a crowd-funding campaign which has alredy raised in excess of £100,000. At the same time Alex and her family are petitioning Parliament to secure full recognition of the condition by the NHS, thereby securing future funding for early dignosis, treatment and possible cure.
The Rotary Club of Barton-le-Clay is very impressed by the courage and tenacity shown by Alex and her family and plan to stay in touch with Alex, publicise her efforts and encourage wider Rotary support to help with the FOP campaign. We would especially like to encourage support from Clubs in District 1260 (Beds, Bucks and Herts) in this initiative.
If you would like to help, please visit https://www.crowdfunder.co.uk/finding-a-cure-for-our-little-lexi
For more information please visit: https://www.focusonfop.com
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