On the 15th of June 2019 our perfect little girl Florence-Rose became unwell with jerking/twitching movements and was taken to hospital.
While in hospital she was placed into an induced coma and after numerous tests Florence was diagnosed with a rare genetic disease called mitochondrial disease, or more specifically, Alpers syndrome. From that moment on our world was turned upside down.
After returning home we began talking with the Charlie Gard foundation who quickly became a strong support for us, helping us to understand more about the disease and offered ideas on how to raise money to get Florence help with things she may need such as equipment and treatment, and they even sent her a special mito monkey to play with.
For us as parents they offered us support such as speaking on the phone and gave us hope for Florence by liaising with medical professionals to get the very best care and support she needed. They continue to support us now after Florence sadly passed away, assisting us to raise money to help children in Florence’s memory. You can visit Florence’s Facebook page, or her Just Giving page here.