Get Florence the expert help she needs

The sporty, vibrant, 15 year old girl in the centre of this photograph is my honorary niece Florence, daughter of one of my childhood besties, Liz and this photograph was taken in the summer last year on one of our annual camping adventures.

Even back then we weren't sure if Florence was going to make the trip as in December 2022 she contracted Glandular Fever and two months later experienced intense stomach pains, chronic fatigue and migraines. She had multiple tests that all came back clear and although a cause was never found she was forced to give up gymnastics and cheerleading , 20 hours of training a week that she absolutely lived for. Anyone that spent anytime with Florence pre 2023 would describe her as the girl that was unable to sit still, couldn't even manage a full film in the cinema, most often found out in the garden on her air track or bouncing on the trampoline. What we didn't know back then though is how much worse things were going to get.

Since February 2024 Florence has been unable to keep food or liquid in her stomach, out of nowhere she started to feel sick when eating and drinking but when she didn't eat or drink she felt fine, just tired. She was admitted to A&E on the 8th February and all attempts to get her eating and drinking to this present time have failed, that is over six months of extremely limited nutrition going into her body.

During this time she has experienced all manor of other complications:

Her bladder has stopped working and she now has a catheter

She has had countless, failed NG feeding attempts, resulting in a decision to have an NJ tube fitted at a specialist hospital

One attempt to fit the NJ under general anaesthetic resulted in Florence not waking up for 2 days

She has experienced non-epileptic seizures and weakness down her left side, leaving her in a wheelchair. This has been diagnosed as Functional Neurological Disorder.

Extreme pain causes seizures that can last several hours and put her rehabilitation back weeks

She has spent no more than a week at home in the last six months, bouncing between two different hospitals and multiple wards.

Her veins regularly burst, cannulas don't last, her arms are bruised and battered and she is surviving a lot of the time on IV fluid and a diet of dissolvable food like quavers, skips, cheese twirls and bread sticks.

She takes laxatives every day as without them her bowels will not work

Over a six month period she has had 8 NG Tubes, 8 NJ Tubes, 4 PEG-J tubes and 6 general anaesthetics.

Over time the continual failing of the NJ tubes meant that a Peg-J was fitted, no medical expert can understand why the tubes keep failing other than to suggest that her small bowel appears to move a lot and be fighting against the tube, pushing it back into the stomach and her stomach is unable to tolerate liquid or food of any sort.

Florence is a child that loves to eat yet the only diagnosis that has been offered is a Disorder of the Gut Brain Interaction which doesn't seem to fit with all of the research that Liz has independently been doing. This diagnosis does not explain why all of the PEG-J tubes keep failing or why Florence's bladder has stopped working and many of the other complications she has been having.

The impact on the family over this time has been indescribable, seeing the day in and day out pain and tears, the false hope and managing the devastating set backs. Liz has had to reduce her hours down at work and spends most nights sleeping on a chair beside Florence in the hospital ward. During this time she has been leaving no stone unturned in her research and is convinced that Florence has Ehlers Danos Syndrome, meaning her body makes poor quality collagen in the skin/tissue. It explains her long standing hyper mobility and also means that her organs work differently, can move more and get squashed. If this theory is right then is is likely that Florence had a vascular compression which is causing the issue with food/fluids.

Every attempt to find specialist help for Florence via the NHS has fallen on deaf ears, they continue to try the same things and expect different results, resulting in a very unwell girl who is slowly losing hope. Florence has been so brave and resilient through all of this, willing to try things, time and time again, that she knows have brought her extreme pain in the past and fighting to get her mobility back after every procedure sets it back.

Liz has found a a specialist in Germany and provisionally booked an appointment to see him at the end of August but the consultation alone is £4500.

We are all desperately hoping that this won't be needed as Liz continues to push the clinicians in the UK to look for other input and consider new research but in the meantime we want to start raising the funds to help this amazing family and give them back some hope.

Let's get our gorgeous girl some answers and on the road to recovery, it's been going on for way to long.

As a childhood bestie group of 6, we regularly attend the Dine with Davina Annual Lunch, where the charity is Action Medical Research for children, we have tickets to attend in October and in the hopeful event that Florence does not need this appointment , all money raised will be donated there to prevent other children like Florence, with rare diseases going through this awful experience.

Thank you so much for reading and donating if you can.

Lucy