The Nimmo family have benefited from our care service since 2005, but following two tragedies in the space of three years, Shooting Star Children’s Hospices has been there for them more than ever before. 

At six months old, Daisy was diagnosed with life-limiting genetic disorder Costello Syndrome – a condition so rare that Daisy was one of only nine children in the UK to have it. The syndrome left Daisy with severe epilepsy, vision impairment, a catheter, a weakened heart, at greater risk of cancer and wheelchair bound. She also had intestinal failure which meant receiving all her nutrition and medications directly into her bloodstream.

Mum, Steph, recalls how she felt when her family were first offered support from Shooting Star Children’s Hospices when Daisy was just a few months old: “Daisy required 24/7 care right from the beginning and with three other children aged seven, five and two, and none of our family nearby, we were absolutely desperate for help. Many people shudder at the thought of having to use a hospice for their baby, but it was a lifeline for us.”

Over the years, Daisy and her family enjoyed short breaks together at Christopher’s in Guildford and Daisy stayed at Shooting Star House in Hampton. The family also benefited from counselling, music and play therapy, and Hospice at Home support. But when Daisy’s dad, Andy, was diagnosed with advanced, incurable bowel cancer in November 2014 and died a year later, Shooting Star Children’s Hospices’s care was more invaluable than the family could ever have imagined.

“Andy was really ill from the moment he was diagnosed and unable to work, and Daisy needed around the clock care. So for a year I was looking after two really ill people, as well as my three other children. Having Shooting Star Children’s Hospices on hand for support meant everything to us during this time. When I needed to go to appointments with Andy, the Hospice at Home team came over to be with Daisy, and if there were cancellations at the hospice they’d call and offer us extra nights.”

“When it came to Andy’s last days at home, we put together a plan with Shooting Star Children’s Hospices because I knew it would be too upsetting for Daisy to be in the house at the same time. When the day arrived, our key worker picked Daisy up and took her to the hospice for an emergency stay. Despite being unconscious the previous day, Andy raised his hand and tried to speak as she shouted goodbye – and died shortly after she left. That’s when I realised that he needed to know she was safe at the hospice in order to be free to leave us.

“Because of Shooting Star Children’s Hospices, Daisy didn’t have to be at home when her daddy died and I was able to spend some precious time with my husband when we needed to the most. But little did we know that just over a year later, we’d be facing another tragedy as a family, and would need Shooting Star Children’s Hospices more than ever.”

At the beginning of 2017, Daisy’s health had deteriorated significantly and she was rushed to hospital, where she was quickly moved to the intensive care unit and put on life support. Sadly, just 13 months after the family lost Andy, Daisy died at the age of 12, with her mum and her three older siblings by her side.

“Daisy’s death was a huge shock and our lives as we knew it had changed once more. It was hugely important to us that we honour her last wish to be at home – so Sarah, our Hospice at Home nurse, set up a special cold mattress in Daisy’s bedroom and arranged with undertakers and the hospital team for Daisy’s body to be brought home. Her three siblings and I spent the night in her room with her, playing her favourite music and saying our goodbyes.  The next day her body was transferred to Shooting Star House for one last sleepover.

“The children and I took great comfort from bringing Daisy back to the hospice – the nurses helped us dress her in her favourite Princess Anna from Frozen dress, we filled her bed with toys, put flowers in her hair and her big sister painted her nails. Our friends came to visit to say their quiet goodbyes in peace and it gave us all such comfort to have this special time alone with her. It allowed Daisy to be a little girl again, not a patient attached to drips and tubes.

“The care team helped me with the funeral plans and I stayed in the parent’s flat upstairs, not having to worry about cooking meals. I could just focus on Daisy and my older children. Just a few days after the funeral, Sarah was on the phone to check how I was doing and we were invited to our first Memory Day at Shooting Star House later in the year – where we hung a star on the memory tree and released a balloon to the sky for Daisy.

“Shooting Star Children’s Hospices has walked with us every step of our journey. They cared for us as they had always promised, holding our hands at the end of Daisy’s life and helping us create happy memories that will last a lifetime. I can’t imagine how we would have coped without their support – after Daisy’s diagnosis, throughout her life, when Andy died and at the end of Daisy’s life. And we’re still getting their support in bereavement and finding a way forward without Daisy and Andy.”

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