Story
Here we go again....
Hi everyone, my name is Kirsty, and I am a proud mum to a unique, funny, sassy and beautiful 11 year old girl called Edith.
Edith is profoundly disabled which affects her both physically and cognitively. Edith’s condition, TBCK Syndrome is very rare and she was only diagnosed in October 2024. Edith is solely reliant on an adult to meet all of her needs. She has low muscle tone, is a wheelchair user and is navigates an eye gaze system to communicate with those around her. She has an unsafe swallow which means she is unable to eat orally and is fed via a gastric button directly into her stomach. Edith has been in and out of hospital all of her life and at times I have had to face fears no parent should have too. Despite all of this Edith is a happy, content little girl and brings so much joy to those that know her. She may not have spoken words, but she still manages to be cheeky and make everyone laugh on a daily basis. I am in awe of my girl who consistently defies the odds stacked against her and really makes the most of the life she has been given. Edith definitely knows more about the world around her than she is able to express and as a result of this she blows my mind with the way she adapts. She is tough and determined but like any parent, at times, it can be hard to watch Edith struggle to do what would come so naturally to any other 11 year old. She deserves the world, and I will do what I can to make sure she gets it.
Five years ago I set out on a life changing mission for Edith, to raise £14,000 for a piece of equipment called an Innowalk. Within nine weeks of setting up Edith’s page we reached our target and were totally blown away by the generosity of family, friends and perfect strangers and their unwavering support. Edith has now outgrown her current Innowalk and I have turned my attention to thinking about how I can obtain the next size for her and coming in at an estimated cost of just shy of £30,000 this will be no mean feat.
Click to see a video of Edith using the Innowalk at home
Originally, I saw this machine as something that may help Edith to walk independently, simulating steps, but it’s become more and more clear that this will more than likely not be the case (although never say never!). I was also aware of the health benefits that this piece of kit would bring and over the last five years this has been the main game changer for Edith. Since crowdfunding for the last Innowalk, Edith has been diagnosed with Osteopenia (low bone density) along with wedge fractures in her spine; read about this here( Bone Density ) and the main reason for this is lack of exercise and normal movement of the body. Osteopenia is the pre-requisite to osteoporosis and sadly this is likely to be a forgone conclusion for Edith, but with the Innowalk it can help to keep Edith's bones as strong as possible by creating that all important simulated exercise. As we all know, exercise is responsible for releasing endorphins and therefore keeping Edith happy and content despite her struggles. Exercise is also vital to keep the heart and lungs healthy throughout life and with Edith already having a healthy heart and lungs that need a bit of TLC following a few collapses over the years, this is another important factor. In June 2022 Edith underwent major orthopaedic surgery to reconstruct both of her hips. The top of her femur bones had not developed into the hip sockets properly and to correct this she needed to have both of her femur bones broken and repositioned into her hip sockets with pins and plates added to secure them into place; the surgery took nine hours and was the biggest thing Edith has ever had done. Edith’s surgeon has over compensated the angle to hopefully avoid any further surgery being needed but as Edith doesn’t walk this increases the risk of repeated surgery. The movement that the Innowalk will give will aid the further moulding of the hip bone into the socket and will go a long way in keeping Edith out of pain and needing further intervention. With all of this in mind, I’m sure you can appreciate how desperate I am to secure another Innowalk for Edith.
As Edith’s mum life has been far from easy but Edith shows me everyday how to deal with the hand that life has dealt. When you become a parent, you don’t expect to have to choose between providing your child with life experiences or providing your child with a piece of equipment to prolong life, but I face that dilemma like so many other parent carers across the world. This statement may seem extreme but without various pieces of equipment to help Edith change position her body and longevity will suffer. The bleakest picture is the density in her bones becomes less, the spinal fractures may become worse and may cause the spine to collapse into the vital organs and the hips may re-dislocate. Edith is also at risk of scoliosis and again not being able to change position can cause this to progress faster, again interfering with the internal organs. A very difficult picture to view and to write, but it’s our reality.
I know times are tough but if you can do anything to help secure this fantastic lifeline for Edith, she and I would be so very grateful.
Thank you for reading our story x
If you want to read more about Edith, you can here:
