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Florence’s story: They were amazing. They came in daily and helped us throughout the night and at weekends.

At 38 weeks and 3 days beautiful Florence came into this world at 7.02am weighing just 4lb 11oz. When Florence was born it took just nine minutes to resuscitate her, then she was put on continuous positive airway pressure (CPAP) to help her with a journey that had only just begun.

Her mum, Amy, remembers back to that precious day, “We had our first cuddle before she was taken to neonatal for where life would lead to where she destined to be.”

Within 24 hours doctors confirmed that Florence had Edwards Syndrome a very complex “life limiting” trisomy diagnosis.

Edwards Syndrome (also known as Trisomy 18 (T18) or Trisomy E) is a genetic disorder caused by the presence of all or part of an extra 18th chromosome. The majority of people with the syndrome die during the foetal stage; infants who survive experience serious defects and commonly live for short periods of time.

“Within 48 hours our little girl fought so hard and came off her CPAP and all forms of oxygen and managed to breathe alone”. Florence also had been diagnosed AVSD Heart alongside other abnormalities with her heart.

“Florence was fed through a nasogastric (NG) tube and suffered from sleep apnoea. This was severe one night and a nurse was at our house in 10 minutes. Nothing was too much.”

Florence's, mum Amy

What it means to have 24/7 palliative support?

After ten days in neonatal care her family decided to bring Florence home where they knew she belonged.

An NHS community children’s nursing (CCN) package was put in place for Florence. Amy describes the support they gave to Florence, “They were amazing: they came in daily and helped us throughout the night and at weekends. They worked around us.”

When the family needed the palliative team, they were there.

“The CCN team helped with errors in our paperwork and co-ordinated our appointments with our GP and health visitors so they all happened together. This meant that we could make the most of our time with Florence.”

Florence sadly passed away 11th October 2.25am at home in her daddy’s arms.

“Three years on from Florence’s death, I still call them. They are there for me when I have a bad day.”

Other families like Florence’s need your help, so every child can get 24/7 end of life care in England.

Worryingly, our new report highlights that not every family is getting the support they need. Our interactive online maps show that the extent to which seriously ill children and their families can access services which achieve these standards is very patchy and depends on where they live.

We are particularly concerned about children and families’ access to end of life care at home, 24 hours a day, seven days a week, supported by nurses and senior consultants who have the knowledge and experience to meet their often complex needs.

We need your to help. Use our maps to find out the situation in your area. Sign our open letter to the government to ask them to take action.

Family stories