Just4Children are hoping to raise ongoing funds for ongoing intensive physiotherapy and equipment.
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, 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 orthopaedic surgeon assessed Leonie in December 2025 and indicated that due to the worsening condition of her left foot, we could not 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, was successfully performed in January 2026 and was necessary before the next extensive muscle and fixator operation (muscle transfer reconstructive surgery to allow weight bearing and mobility). Months of casting now follows before the next surgery.
Finally, for the first time after four long tearful and painful years, there was hope as Leonie’s left leg is now straight. 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. She is intelligent, thoughtful, a mentor to fellow classmates and is adored by her teachers and other students.
But, sadly, early Spring brought terrifying medical news and a major setback, and Leonie’s leg muscle transfer surgery is on hold as this precious child faces a new horrendous challenge. Statistics reflect that at least 60% of children diagnosed with quadriplegia like Leonie will suffer from spinal curvature of varying degrees, and Leonie’s curvature of 71% is characterised as severe. Currently, her spine is pressing against her stomach, bowels and other organs causing extreme pain, and it is a matter of time before the spine presses against her heart and Leonie will eventually die. The choices, which no mother should ever have to face, are to forego surgery and watch her child live her remaining days in agony, or opt for a high-risk neuromuscular scoliosis surgery which carries its own odds that Leonie may not make it. Her mother opted for surgery which is scheduled for October, and currently, and in the next few months, Leonie is and will be undergoing extensive pre-admission testing and assessments to prepare the surgical team for the best outcomes.
Post surgery, Leonie will require months of extensive rehabilitation, and any donations will be utilised for therapy, treatment and approved adaptive equipment not covered by the NHS but medically necessary for her rehabilitation.
Please find it in your hearts to say a prayer for Leonie and keep positive thoughts as we all desperately need Leonie in our lives. Despite all the setbacks and hardships, Leonie maintains her infectious laugh and big smile and is truly a profile in courage.
Please consider joining #TeamLeonie on Facebook
Please consider joining the #TeamLeonie on Facebook and Twitter
