Our Story
Florentina’s Footsteps Foundation was officially registered as a charity on the 15th April 2025 exactly 5 months after Florentina gained her angel wings.
The name Florentina’s Footsteps represents more than remembrance, it is a promise to continue forward with purpose. Every step we take is embodied with Florentina’s joy, happiness and the love she shared.
Hospital Diagnosis & Treatment
Florentina was diagnosed with stage 4 high risk neuroblastoma, a rare childhood cancer affecting around 128 children in the UK each year. In May 2020 just four days before her fourth birthday we were told the most devastating news. Throughout her frontline treatment she bravely endured intensive rounds of chemotherapy, high-dose stem cell treatment, two tumour removal surgeries, radiotherapy and immunotherapy. She also had endless amounts of blood transfusions and platelet transfusions. Her treatment plan took place in Great Ormond Street.
Despite everything she went through Florentina was never able to achieve remission. At the end of frontline treatment we learned that her cancer had relapsed, at which point survival rates drop to just 5%. We were then able to access a trial drug, lorlatinib through compassionate use alongside 12 further rounds of chemotherapy. This treatment initially worked well and significantly reduced the tumour, but sadly Florentina relapsed once again.
As treatment options became increasingly limited, we managed to take her to Rome for CAR-T therapy. Tragically, this was not successful and there were no further treatment options available. Florentina passed away on 15th November 2024, aged just seven years old only four years after her diagnosis.
Before Diagnosis…
Florentina was my firstborn and as a first-time parent I did everything by the book. Before her diagnosis she was a healthy, happy little girl. I had never needed to take her to the doctor or hospital, as she was always well and full of life.
Florentina first began showing symptoms in April 2020. She started complaining of intermittent stomach pains and back aches. At the time we were still under COVID lockdown restrictions and it was extremely difficult to get a face-to-face GP appointment. I had to explain her symptoms over the phone and the GP said it sound like severe constipation.
A few days later Florentina began spiking high temperatures that would not come down with Calpol. I took her to A&E, where we were initially told it was likely viral and that she would be fine within a few days. Sadly, this was not the case. Her symptoms continued to worsen and she was in severe pain. Her stomach became increasingly distended and she completely lost her appetite.
I took her back to A&E and refused to leave until she was properly investigated. That evening will haunt me forever. At midnight, a doctor came in and woke me. She said, “We have found a mass in Florentina’s abdomen and she will be blue-lighted to Great Ormond Street first thing in the morning.”
Her frontline treatment then began whilst I was also 6 months pregnant with Sofia.
The most amazing little girl…
Florentina was the most amazing little girl you could ever come across. Cancer didn’t define Florentina she lived life to the fullest and soaking up every moment. She would always share her laughter and love wherever she could. Her time here was cut far too short, but the impact she left is everlasting. This charity was born from her legacy as she truly was an amazing little girl who was a true inspiration to everyone that met her.
We miss you so much, We miss your smile, We miss your laughter, We miss your cuddles.
She did however give us the greatest gift from up above of baby Franco who arrived in September 2025.
Florentina’s legacy continues to shine bright and we will never stop saying her beautiful name,
Florentina Rose Burton xx