Sadie needs private therapies and equipment to enable her to move independently and to lead a fuller life.
Our beautiful daughter Sadie is 6 years old from Braintree in Essex. She was born on 1st August 2018.
When Sadie was around 3 months old we noticed she wasn’t developing as she should. Since then we have fought for answers to help us move forward. Finally, in December 2019, after multiple trips to Great Ormand street hospital and lots of tests Sadie was diagnosed with a type of Leukodystrophy called Pelizaeus-Merzbacher Disease (PMD), which is a rare genetic disorder. PMD is a disorder that affects the brain and spinal cord and is characterized by problems with coordination, motor skills and learning. PMD generally only affects boys, making my daughters even more rare. Sadie was also diagnosed with epilepsy in March 2020, has global developmental delay, Nystagmus and learning disabilities.
Unfortunately, her consultants still don’t have the answers to what milestones she may or may not achieve at the moment. Sadie is currently able to sit on her own unaided, crawl around her surroundings and can pull herself into standing, which are all things we didn’t think we would ever see her do. She is also doing amazingly well with weight bearing through her legs and taking steps with the right support. All of this wouldn’t be possible without all your love, support and donations.
Since Sadie was born she has suffered ongoing problems with her feeding. We struggled to get enough nutrients in her on a daily basis and she was therefore losing weight. Sadie eventually had an NG feeding tube inserted temporarily until she had an operation to insert a gastrostomy tube into her tummy, and it’s been a blessing! She is now solely fed through her gastrostomy tube with water and specialist feed through the day and night. She is NIL by mouth.
Sadie is such a happy, loving little girl, who is always smiling and we just want the best for her. The NHS can only provide her with one physio session a month. We are therefore trying to raise as much money as we can for Just4Children to enable us to provide her with the therapies and equipment that she deserves and needs to progress. And as everyone can see that has followed our journey so far, it is definitely worth every penny! Private physio comes at a great cost and the saying every little helps has never meant more to us than it does now and no matter how small a donation, it really will be appreciated.
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