Daisy has a rare epilepsy condition called SCN2A, which means a channel in her brain hasn’t developed as it should, causing seizures and developmental delays.

She lives in Worksop with her mum and dad (Jade and Gareth) and her big sister (Poppy). Jade said, “I had a straightforward pregnancy and then at 34 weeks my waters broke. I wasn’t too worried but when I went for a scan, they saw that I had no fluid and Daisy had strange movements.

Gareth said, “I remember getting a call to come quickly as Jade needed an emergency c-section. When I arrived at hospital, I went straight into theatre with Jade and Daisy was delivered.”

Soon after delivery, Daisy had to be resuscitated and at two days old, nurses noticed that she was having regular seizures. Daisy spent five and a half months in hospital before Gareth and Jade brought her home and adjusted along with Daisy’s big sister, Poppy, to their new way of life.

It was a consultant at Sheffield Children’s Hospital who referred the family to Bluebell Wood.

“At first I was worried, even though we had a visit in hospital from a Bluebell Wood nurse, who looked after Daisy so well, I thought palliative care just meant end of life care.” Jade explained.

“I soon realised after our first visit that the hospice offered so much more for us as a family. It was just amazing! The staff are so caring to us all and it really is a home from home.”

“We really enjoy the music group, wriggles and rhymes, other groups outside the hospice are just not set up for children like Daisy. It’s great to feel part of a group with other families and we have made friendships with other parents who use Bluebell Wood. We regularly support each other and share advice.”

                   

Daisy has also enjoyed hydrotherapy and short breaks with her family at the hospice. Jade says, “Daisy knows where she is as soon as we walk through the door and she is so content.”

Gareth described how their first stay at the hospice was, “The food is brilliant and the beds are so comfy that we were able to have a rare lie-in. We all enjoyed the cinema room and played in the garden. Our five-year-old daughter, Poppy, just loves the music room and she had a go at playing the instruments.

“Poppy has also started going to the sibling group and making friends with other children there, which is so important.”

When asked how to describe the support from Bluebell Wood, Jade said, “It’s a lifeline for us really and nothing is too much trouble for the staff. There’s nowhere like it and people here truly understand what we need.”

Daisy’s parents are also fantastic fundraisers in their spare time, hosting a ‘Dance for Daisy’ event and raffle. Along with his friend, Kyle, Gareth also ran the Worksop Half Marathon in 2024, ending the race by carrying Daisy over the finish line. They have raised over £5,000 for Bluebell Wood.