Just4Children are hoping as soon as we possibly can to get Sadie into private physiotherapy to enable her to move independently and to lead a fuller life.
Our beautiful daughter Sadie is aged 20 months 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 multiples 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 daughter’s case even more rare.
Unfortunately, her consultants don’t have the answers as to what milestones she may or may not achieve at the moment. Sadie is currently able to sit unaided for short periods of time which is amazing. However, she does need a lot help with all daily activities like playing and eating.
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 tolerating her milk and is slowing regaining weight.
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. 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.
Facebook and Instagram: The life of Sadie Chittock – please follow her
Thank you for reading!
Rachel and Bailey