Sadie needs private physiotherapy to enable her to move independently and to lead a fuller life.
Our beautiful daughter Sadie is 3 years old from Braintree in Essex. She was born on 1st August 2018.
When Sadie was around 3 months old we noticed she wasnt 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 Ormond Street 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 case even more rare. Sadie was also diagnosed with epilepsy in March 2020.
Unfortunately, her consultants still don’t have the answers as to what milestones she may or may not achieve at the moment. Sadie is currently able to sit on her own unaided, crawl around on her own and can pull herself into high kneeling which are all thing we didn’t think we would ever see her do! She is also doing amazingly well with weight baring through her legs and taking steps with the right support. All of this wouldn’t be possible without all of 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 a 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 through the day, bended diet at feed times in the day and milk over night as 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 private therapy 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. 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.
Thank you for reading!
Rachel and Bailey