It breaks my heart to say that our precious Sophie passed away peacefully on the 4th Oct 2018 at Little Harbour Hospice in St Austell. She fought a major chest infection for over 2 weeks. She has been incredibly brave throughout her 18 years with challenges from the day she was born by emergency c sec at 30 weeks. Spending the first few months of her life in the neo natal high dependency ward she proved to us all that she's a fighter. She had Myotonic Muscular Dystrophy and Scoliosis. When she was 6 her Scoliosis became life threatening, her Spine had curved so much that the only option was Spinal surgery at Great Ormond Street Hospital. For the 6 years there was 60 trips to London, nearly 20 Spinal Operations and ongoing pain management and therapy. She has broken the titanium rod quite a few times and has needed lengthening operations as she has grown. The nerve damage this has caused means that Sophie was in a lot of pain all day even with extremely high doses of painkillers.
On March 20th 2014 she had "The biggest surgical procedure" that is performed at Great Ormond St when she had a 5 hour Spinal Fusion Operation she had a steady recovery and came home after 10days!
Although this surgery was very extreme it meant so much.A section of Sophie's spine was fused to 2 titanium rods meaning she no longer had the risk of breaking the rods. It gave her the ability to enjoy her life, and she made the most of every moment.
She battled regular chest infections, each one taking a little more effort to recover, she always managed to defy the odds and pull through. Sadly this time she was too weak and after 18 days in high dependancy and critical care at Treliske she couldn't battle anymore.
On Thursday evening she moved up to the Little Harbour Hospice and surrounded by her family peacefully took a final breath.
Throughout her nearly 18 years Sophie made a massive impact on the lives she touched. She had a hug for everyone no matter how poorly she felt. She was so happy if she could get you dancing.
I would love to raise enough money to give Sophie a fitting memorial and enable everyone she loved so much to show their love for her.