A six year old girl from Chew Stoke has defied medical expectations and taken her first steps.
Edie Browne was born with a unique genetic disorder which severely affects her development, mobility, immunity, health and cognitive ability. In her short lifetime she has had open heart surgery, suffered a series of life threatening seizures, endured multiple joint dislocations due to her hypermobility and for the first three years of her life was tube fed and unable to speak. With spinal and joint problems the prospect of Edie ever walking even with assistance seemed impossible but now this tenacious little girl has taken her first steps completely unaided.
Edie’s miraculous progress from wheelchair bound infant to toddling six year old is a result of her family’s unwavering determination and care and local community fundraising efforts. Over the years the community have raised money to help Edie from funding specialist beds, to building a sensory garden for Edie to enjoy at home.
Then last May the Gazette reported that Edie had received a Hart Walker from Chelwood Bridge Rotary Club. The specialist device for young children with mobility difficulties helps them move whilst fully supporting their limbs, body and weight. Her parents Sharon and Jason Browne had hoped the walker would allow Edie to interact and play with her older siblings, and the Rotary Club were so moved by Edie’s story they wanted to help make that happen.
“Despite her problems Edie is the most happy, joyful and determined little girl you could wish to meet,” explained Spike Parker, who was president of the Rotary Club during the fundraising effort. The club unanimously agreed to help and Edie received her walker.
“Edie took to the walker straight away. Her ability to move when and where she chooses was a real thrill for her. Over the past year she has used the unit on an almost daily basis. However what was never expected was that six weeks ago she stunned everyone by taking independent unaided steps,” said Mr Parker.
Edie took her first tentative steps in March and as she progressed to be able to cover short distances the Browne family wanted to share Edie’s achievement with Spike Parker of Chelwood Bridge Rotary, inviting him to visit and see Edie walk for himself.
During his visit Mr Parker said that seeing Edie enjoying walking made him so grateful that the Rotary Club could help. For Edie’s parents their gratitude knows no bounds.
“Spike has been amazing,” said Sharon Browne. “Without his support and genuine care for Edie’s quality of life it would not have been possible for us to get the Hart Walker which in turn has helped Edie to take her first independent steps.
“All the other walkers Edie had tried available on the NHS in the past were very heavy which made it very challenging for Edie to progress in because of her low muscle tone and hypermobility. The Hart Walker has helped Edie to build up her stamina, strength, confidence and rhythm of putting one foot in front of the other.”
She added “All the odds of Edie taking independent steps were against her. Last March she suffered a life threatening seizure lasting three hours which resulted in her being in a coma. She regressed with her development as a result and wouldn’t even weight bear for three months. This could have been permanent but she slowly recovered so for Edie to be taking independent steps is a true miracle. Without the Rotary club and Spike funding the majority of the cost I am sure her progress would not have been so significant.”
Whilst Edie’s progress is a cause for celebration, she will continued to face more physical and medical challenges in the coming months and years. Doctors say further heart and spinal surgeries are likely. In a bid to delay the spinal surgery and help with Edie’s pain the family are now trying to fundraise for a new scoliosis second skin suit that helps support Edie’s back and reduces her discomfort. The suit is the only back bracing system that Edie can tolerate due to her unique set of medical complications. The aim of the suit is to slow down the progression of her spine curvature to delay the operations which have a heightened risk factor for Edie because of her condition. The suit is not available on the NHS and Edie has outgrown her original one which she found greatly beneficial.
Sharon said: “We are going to need to start fundraising again and any help however small will make all the difference to Edie’s quality of life. We need to raise £2,200. So far we have £400 and have a Gofund me page set up: www.gofundme.com/edies-scoliosis-suit.”
Every step literally and figuratively for Edie is a battle but one that her family, friends and supporters know she will face and win.
“We all wish her well, in the certainty that she will continue to amaze us all with her progress,” added Spike Parker.