Lucie's Life Changing Spine Surgery
Our 15 year old daughter Lucie, isn't like other teenagers. In fact, much like Peter Pan, she just doesn't want to grow up. In Lucie's words: “Every day I wake up is another day closer to a point... I just don’t want to think about."
In the last 2 years, Lucie's spine has developed two curves, as the images show. It is the shape of the letter S – and the curves are increasing in severity.
Her condition is deteriorating. Her spine is not only curved but is rotating and twisting. This is slowly crushing her ribs, leaving her in constant pain. As it continues to deteriorate it can crush her internal organs; diminishing their function and leading to serious complications.
It wasn't always this way. Lucie was an amazing gymnast and gymnastics coach, until she developed severe double major scoliosis.
Lucie was listed for major spinal surgery called Vertebral Body Tethering in 2016. She was thrilled at the prospect of being "fixed" and pain free. This minimally invasive surgery involves screws being inserted into each vertebra and tethered with a cord, which is pulled taut to straighten the spine, while maintaining flexibility.
Devastatingly, five days prior to her surgery date, we discovered she has a rare heart condition called Junctional Ectopic Tachycardia. Not only did she have to deal with her spine surgery being cancelled, but a new and terrifying diagnosis. After months of taking heart medications that made her feel ill and exhausted, she had heart surgery in August and has been left with an implant in her chest. This was a frightening time for Lucie, and both mentally and physically exhausting... but her positive attitude pulled her through it!
Lucie's spine surgery was rescheduled for December. Heart wrenchingly, only days prior to the surgery date, her surgery was cancelled, again. Her spine consultant informed us that due to new regulations, he is now unable to perform this procedure in the U.K. for the foreseeable future.
When Lucie's skeletally mature - experts believe she has about 6 months - this treatment will not be available to her. The only treatment in the UK would leave her with severe disabilities for life.
Lucie is restricted by her pain daily and cannot do many simple things, such as sit, walk, lie down, and many more things we take for granted, without crippling pain. She is reliant on pain killers to get her through each day and night. She can't walk her dog, attend school, go shopping, socialise with friends or practice her passion... gymnastics. Our hearts break to see her in such agony.
===Join our race against time===
Treatment is available that will change her life. Sadly, it’s not in the UK, and not on the NHS, meaning we have to find a staggering £150,000 to change Lucie’s life. If you can help us to raise £60,000 for the deposit, we can book Lucie in for her surgery!
Lucie’s stepdad Andy and granddad Bob will be running 7 marathons in 7 days – despite Andy never really having ran more than a mile in his life before! The date will be set soon!
The challenge will see the pair run from Pontefract in Yorkshire, where Lucie’s grandparents are from, to our new hometown of Cheltenham. We're hoping to inspire people to both donate AND get the public inspired enough to do their own fundraising challenges for Lucie.
Andy's words:
“I love Lucie as if she was my own, and I am determined to raise this money for her or die trying. We’ve seen her go from the active and happy girl she was just a few short years ago to being cooped up in her bed, unable to find a position that doesn’t cause her agony – and it’s time I do something to help.
The pain I might have to put myself through will pale in comparison to the pain Lucie has to go through every single day of her life. We’re not just running 7 marathons, we’re racing against time to get Lucie’s life back, before it’s too late.
Our target is to get as many people to take on a challenge as possible, to raise money that will all go into one big pot to get Lucie the treatment she needs".
The 7 marathons is an enormous challenge, but considering we need to raise such a huge amount of money, we're conscious we need more people to step up and get involved if we’re going to beat the clock. Every person and every penny counts.
It would mean the world to Lucie, to our family, if you can donate, however small, or help with fundraising, to help us achieve this life changing operation for Lucie.
Thanking you from the bottom of our hearts for your support.
Please, please SHARE this post by clicking the share button - let's change Lucie's life, before it's too late.
Debbie and Andy (Lucie's parents) xxx
❤️⌛️#GotLuciesBack:OurRaceAgainstTime
Links to news articles about Lucie
https://www.itv.com/news/westcountry/2017-01-06/family-desperate-for-funds-for-life-changing-surgery/
http://www.mirror.co.uk/news/uk-news/teenager-faces-race-against-time-9540560
http://www.gloucestershirelive.co.uk/race-against-time-to-raise-150-000-for-15-year-old-lucie/story-30021824-detail/story.html
https://www.thesun.co.uk/living/2796579/teenager-whose-twisted-spine-is-crushing-her-rib-cage-desperately-needs-life-changing-op-not-available-on-nhs/
