Campaign by Story
Leonie, a beautiful, intelligent, comical 13 1/2 year old girl from Louth in Lincolnshire, with an infectious laugh and a smile so wide it will melt hearts, was born 11 weeks prematurely. Leonie's story and the mission of #Teamleonie started in 2018.
A year after Leonie's birth, doctors diagnosed her with Quadriplegia Cerebral Palsy, the most advanced of all CP diagnoses. Sadly, many medical expenses for her condition are not funded by the NHS. Leonie's only mobility as a baby, toddler & young child was to move on her back by using her head. #TeamLeonie was born in 2018 to start fundraising for life changing spinal surgery to help Leonie walk one day. In February 2019, Leonie underwent a procedure called a Selective Dorsal Rhizotomy (SDR), a minimally invasive spinal operation that can permanently reduce leg spasticity and eventually help with independent walking in children with CP. Fundraising paid for the surgery, needed medical equipment and ongoing, weekly physical therapy sessions.
In July 2021, a surgery COVID lockdowns delayed 18 months, Leonie underwent femur osteotomies, knee realignment and hamstring surgery. For the first time ever, her twisted, frogged legs became straight legs, or 'new legs' as Leonie calls them. The NHS paid for the extensive surgeries, but not all needed medical equipment and no ongoing, critical physical therapy yet again. Unfortunately, post surgery leg casting caused Stage 4 necrotic ulcers, severely impacting Leonie’s left foot and she cannot stand. A new orthopedic surgeon recently assessed Leonie and indicated that due to the worsening condition of her left foot, we cannot wait until her legs fully develop, so he placed a referral for tendon, Achilles and muscle surgery. This surgery, to place her leg into a more workable position, must be performed asap before the next extensive muscle and fixator operation (muscle transfer reconstructive surgery to allow weight bearing and mobility).
We hope to hear of an 2026 surgery date asap. Finally, for the first times after four long tearful and painful years, we do have hope.
Today, Leonie can sit upright, ride a specialised three wheel bicycle and, with improved manual dexterity, is quickly becoming a mini-me in the kitchen learning her Mum’s chef skills.
Despite the setbacks from the ulcers, Team Leonie supporters are tirelessly determined to ensure that the miracle of Leonie’s standing and walking happens one day. Her therapy team is focusing on building up Leonie’s core strength in anticipation of additional surgery. Fundraising is necessary to cover the ongoing physical/occupational therapy, equipment and any surgical procedures not covered under the NHS. While many of the mobility strides Leonie made prior to the 2021 surgery setbacks are not possible, we have not doubt Leonie will tackle the next round of physical therapy with big smile and laughter and her typical I can do this! determination.
We are excited to announce that due to the generosity of fundraising, Leonie’s Mum was able to purchase a special adaptive car with a remote controlled carrier to transfer Leonie from her wheelchair to the rear passenger seat and back to the wheelchair. The new equipment makes transport easier for Leonie and her Mum, enables them to safely travel to appointments and extends Leonie’s ability to attend activities such as scheduled social sleepovers. In 2025, she was able to get a shower wheelchair, and order a new regular wheelchair to address the growing body needs of a teenager.
Please consider joining the #TeamLeonie on Facebook and Twitter
Any donation will be extremely appreciated. Thank you.