Walking 100 miles for Florence

Louie, Alfie and Tom are embarking on a 100+ mile walk from Bowness-on-Solway to St Mary’s Lighthouse in Whitley bay to support Nottingham University Hospital Queens Medical Centre Rheumatology ward, PICU ward and Unit E39. We are raising funds for this incredible cause because our artist Tom’s, 7 year old daughter, Florence, was recently rushed there, and they saved her life.

Here is her story…

On the 2nd August, myself and my wife took our 7 year old daughter to hospital to be checked over. We’ve been in and out of hospital for the last 4 years with a rash that no one could diagnose or explain why it was there. Once the rash is in full swing she then gets pain in her joints, once the joint pain is severe enough she would get a fever. This was once of those episodes where all 3 were present. After seeing the doctors they kept us in for tests and to monitor her.

Florence worsened slightly each day, but because of the condition they thought she had, its was tricky to diagnose. The doctors explained to us the they think she has SJIA (Systemic Idiopathic Juvenile Arthritis), however to diagnose such condition, they would need to exclude all other illnesses. So she had scans, blood tests echos, lots of antibiotics and still nothing was found. Until on the 8th August she deteriorated rapidly. Her blood pressure dropped to a dangerously low level, and her bloods were showing signs of inflammation. The next day they blue lighted us to Nottingham QMC where there is a Paediatric Rheumatology team ready to take over our care and being treatment for the SJIA.

As soon as we got onto the ward they began treatment for the SJIA, but at this stage I think it was too far gone. A rare complication of having SJIA, and leaving it untreated, is to go into something called MAS / HLH (Macrophage Activation Syndrome). This, as I understand it, is severe body-wide inflammation, which Florence was now suffering from. On the 10th August, we got the horrible news that she would need to be taken to intensive care, and to be ventilated. At this point the inflammation in her body was so bad that her organs began to fail. She needed support for all her major organs, while the teams in Nottingham tried desperately to stop the MAS from getting worse.

We took it in turns to sit by her bedside and pray that things inside her body would calm down. They gave a cocktail of different medicines to try and stop her body producing the things causing the inflammation, including a round of chemotherapy, organ transplant rejection drugs, high dose steroids. After 5 days of Florence being intubated the doctors had done everything they could for Florence and we were warned that the situation was critical and her chances of surviving were low. All we could do was pray.

I’ve no idea how, but somehow the Rheumatology team and the PICU team at QMC saved her. The situation went from being rock bottom, to becoming more and more hopeful each day. In total Florence was intubated for 9 days before they woke her up. She remained in QMC for a further 6 weeks after coming off the ventilator, receiving more chemo, steroids and other meds until her blood results and her clinically improved enough that we could take her home.

She is still improving each day, she has regular blood tests which agree with the improvement, and she looks a little better each time she wakes up. She has some damage in her right leg which we are working on, she has had 2 micro bleeds on her brain (which show no signs of any damage), and some pressure sores on her head. I think considering how bad things got, we have somehow come out of this very lightly. I’m hopeful that Florence will make a full recovery, and in a few years all of this will be a distant memory, but for now we will need to keep a close eye and keep up with the regular testing.

I think this whole episode has just hit everyone that knows Florence, and everyone that has come into contact with her. One day she is having fun in the first week of the summer holidays, and the next she’s hospitalised with a life threatening, rare, illness.

The funds raised will be split between the 3 wards and will be used to help the children and also the parents that are unfortunately going through a similar experience.