Daisy’s story: “Each day we hope for the best”

“Making decisions when you are in crisis and not able to think rationally is terrifying. I have never felt more alone; my brain empty, like it had stopped functioning completely. In the middle of the night, things can become very scary.”

Daisy’s mum, Emily, shares her story:

Daisy was diagnosed with Rett Syndrome when she was two years old. We had known for a while that she was not hitting the normal developmental milestones, but hearing the words ‘Rett Syndrome’ for the fist time, came as a pretty big shock. A quick google of Rett Syndrome will tell you that it is a severe, life limiting condition with no cure. It hit us all hard.

I coped in those early months by finding out as much as I could about Rett Syndrome and began to focus on the research into treatments and a potential cure. We all convinced ourselves that Daisy was not going to be as severely affected by Rett as some of the other children we had read about and tried to remain optimistic about her future.

By the age of three Daisy was still not mobile and had lost almost all of her hand control. She was also struggling to eat and drink and was not gaining weight. Her seizures were getting progressively worse and I had already lost count of the number of times we had arrived at hospital in an emergency ambulance. Things got so bad that she remained in hospital for almost four months: “It might not get better than this,” was echoed by a number of different doctors.

Thankfully, Daisy’s health stabilised for a while after this and she was able to start school. It was a joy to see Daisy enjoying life again.

When the pandemic hit a year or so later we lived in fear of Daisy getting unwell and followed the shielding guidelines rigidly. When the schools reopened and we started mixing again, Daisy developed severe pneumonia and, once more, was rushed to hospital in an ambulance. We were told she would need to be put on a ventilator or she would not survive. The other option was to make Daisy comfortable and transfer her to a children’s hospice for end of life care.

Impossible decisions

Deciding if it is for the best to keep your child alive is an impossible decision to make when you are in crisis and not able to think rationally. I have never felt more alone; my brain empty, like it had stopped functioning completely.

What followed was a blur, but Daisy was transferred to intensive care and ventilated. Remarkably, she was back in my arms a week later and managing to breathe by herself on high flow oxygen. Sadly, life never seemed to return to normal again after that. Daisy bounced in and out of hospital with recurrent chest infections and we struggled to keep her well enough to return to school.

It was during one of these hospital admissions that Daisy’s doctor was able to be completely honest with us about Daisy’s prognosis. Multiple doctors had spent weeks trying to treat a chest infection that did not seem to be improving. Her veins were so damaged from so many previous attempts to get IV lines in that it was becoming increasingly distressing to watch her being held down, poked and prodded with limited success.

“I want to take her home,” I said, when her consultant and I began to weigh up the options. That was when we were introduced to Daisy’s most wonderful palliative care consultant who changed everything. “She may not have long left,” she told us with brutal honesty. I was relieved to finally feel comfortable to be honest myself; we were sick of seeing Daisy struggle on in hospital and, although the guilt never passes, we knew the decision to begin to prioritise comfort over intrusive treatments was now the best we could do for Daisy.

Precious time spent together at home

Two years on and Daisy is still at home with us. It often feels as if she is slowly fading away; sleeping endlessly and when she does wake, not responding to us like she once did. On better days we get smiles and brief periods where it feels like she is truly still with us. I am incredibly thankful for this time we have all had at home with her. Seeing her sleeping comfortably in her own bed and cuddling on the sofa with her sisters is precious.

I can not downplay the emotional challenges that come with caring for a child at this point in their life but I am grateful that we have been supported by both the palliative care team and our local children’s hospice (Acorns) to care for Daisy in the comfort of her own home, with her family by her side. Each day we hope for the best, but equally, we are now as prepared as we ever can be, for the worst.

I will always be grateful to Together for Short Lives for advocating for families such as ours and pushing children’s palliative care higher on the political agenda. We know that nationally resources can be scarce and patchy; not everyone has access to the right support at the right time. This really needs to change. No one should have to face the prospect of their child dying, but every child and their family deserves the dignity and support to chose the right path for them when such impossible decisions have to be made.

Emily has been supporting Together for Short Lives’ most recent campaign

“There have been periods of time where we have felt like Daisy has been at the end of her life at home and it has felt like the only option is to take Daisy to hospital in an ambulance – something we really don’t want to do. We want Daisy to stay at home with us.”

Together for Short Lives believes every child and their family should have the right to access high-quality children’s palliative and end of life care at  home – if that is what the family chooses.

• Currently, only one in five local areas in England provide families with access to 24/7 palliative and end of life care.
• Together for Short Lives is calling on the UK government to urgently plug the £300 million funding gap in England to ensure children and families can access palliative and end of life care at home, 24 hours a day, seven days a week, supported by nurses and senior consultants.
• Read more here.