With Love Florence-Rose has been set up in memory of our beautiful baby girl who sadly lost her battle with POLG in December 2019. We are raising funds to allow us to purchase and gift special presents to others who suffer from this disease as this is something Florence would have loved herself.

Florence's Story

Our daughter Florence-rose, at just before eight-months-old, was rushed to Broomfield Hospital after suffering from a seizure with jerking type movements.

Doctors tried different medicines continuously throughout the night to try and stop the seizure, but they were unsuccessful, and Florence was put into an induced coma, rushed to GOSH, and then placed into PICU with a one-to-one nurse. Eventually, after numerous tests and lumber punctures, the doctors decided to try and bring Florence out of a coma and allow her to breath without assistance. Florence took longer than expected to wake up, even with what they called the anti-dote, which was meant to wake her up instantly.

When Florence did wake up, she was like a new born again and wasnt her usual, happy self. She was taken to the neurology ward where she was on high dependency and was still continuously twitching. After her genetic tests came back myself and Florence's dad were taken to a room where we knew we'd receive some truly dreadful news. How your life can change in an instant. Our perfect princess was diagnosed with a mitochondrial disease called POLG, or Alpers syndrome, and also continuous epilepsy. We were told there was no treatment for this disease and her life expectancy would be a few months to a few years.

However, as Florence's parents, we wanted to do everything in our power to give our little girl the very best quality of life that we could, so when we heard about a potential treatment, we knew we had to keep fighting. There was preclinical research that suggests there may be a medication that will help Florence, so we began fundraising in the hope that we would be able to access this medication and give Florence the very best chance at a meaningful and quality life.

Sadly, our beautiful baby girl passed away on Friday 6th December 2019 at just 13 months old. Florence didn't get the chance to even try the potential treatment, so cruel is this disease. 1 in 100,000 people are affected by POLG, and there is currently no cure.

We need to find a cure, but in the mean time we have decided to fundraise in Florence's memory to purchase special gifts that we can gift to others who live with mitochondrial disease. We hope that this special gift 'With Love from Florence' will bring a smile and some comfort to those who currently live with the disease. Florence would have wanted this, so we will do this in our beautiful baby girl's memory.