Rae Rae's story

Nadine says: “The moment I found out that my unborn child had Edwards Syndrome (Trisomy 18), I was shocked and upset. I was told that my baby would die from her condition and so keeping Rae Rae was a big choice to make. A day after giving birth to Rae Rae, Demelza contacted me, and they came to visit us - not only with information, but also with gifts! They made me feel at ease, and very much supported.”

From that first contact, Demelza became a regular part of their lives, offering care and support for Rae Rae and giving the family the opportunity to make special memories together.

“Two and a half weeks later, we were at home. Demelza came to visit us again and they explained to me about care at home and at the hospice. Together, we put dates in our diaries for Rae Rae to get care at home each week. They not only cared for my daughter like she was their own, they also interacted with my other two children and made them feel loved and supported. One of the Demelza nurses cared for Rae Rae one evening, and when I came back, she had helped Rae Rae to make a little Halloween canvas for me. It meant a lot to me that while I was having fun, so was Rae Rae!”

“Demelza’s memory making crew came to visit us at home too, and they made beautiful molds of Rae Rae’s feet and my hands. They also made prints of my other two children's feet, along with Rae Rae. Once again, they interacted with my other two children, including them and making them feel special as well.”

Demelza was also on hand when times got tough.

“Not only did Demelza visit us at home, but they also came to visit me and Rae Rae when we were admitted to the hospital. This extra support meant so much, as I lost my mum in 2020, and I'm not close to my father. So having Demelza there spoke volumes, and they were so caring.

“My first stay at Demelza was for Rae Rae’s end of life care. The team supported us and did more memory-making with Rae Rae and all of us. As the months went on, we had to receive step-down care.

“During that stay, my eldest two received various gifts to take home. To both of them, it felt like a home away from home. Two years on, my children still ask to go back to stay at Demelza.”

After that initial stay, Rae Rae was able to go home, and the family went on to have short breaks at Demelza’s hospices, being wrapped up in care and making use of the accessible facilities.

“I will forever be thankful for the Demelza team: they loved, cared for and spoiled us all. Demelza provided all-round support, as well as a place to stay, an indoor hydropool, sensory room, soft play area, and so much more! My family and I were fortunate enough to be cared for by the Demelza team in Sittingbourne as well as the team in Eltham. All the staff members in both sites were so attentive, loving and supportive to each of us individually, as well as a family.

“During our stays at Demelza, I was able to get adequate rest as well as spend as much time as I liked with my daughter and my family. This support was breathtaking. In the beginning, I was very anxious about staying away from home and what impact it would have on my eldest two children. But during my first stay, I realised how much of a positive impact Demelza had on us all.

“Rae Rae’s dad appreciated how the male staff took a genuine interest in him and his talent, taking the time to bond with him through music. They took the time to help upbuild and encourage him, and one staff member spoke about his own journey of being a medical dad, which helped Rae Rae’s dad feel seen and understood.

“When my family and friends visited me and Rae Rae at Demelza, they were awe-struck by the whole experience. They pointed out how adored we were by the whole team and spoke about how accommodating and welcoming everybody was. And how amazing the cake was!”

When Rae Rae was at end of life, Demelza was able to ensure Rae Rae could be cared for at home, surrounded by those who loved her.

“After Rae Rae passed away Demelza was compassionate and comforting. They brought a cold cot to my home, and the team was extremely caring and nurturing. They felt like my aunties supporting me during a very sensitive and tough time.

“Our Demelza nurse was with me and my sister when the funeral director came to take Rae Rae. She was so supportive and caring, and I knew how much she adored Rae Rae too. Rae Rae and my other two children gained an extra mum and many aunties and uncles during our time with Demelza.”

Demelza’s bereavement support is there for families as long as they need us, and we’re still supporting Rae Rae’s family today.

“Before Rae Rae passed away, I was receiving art therapy, and I continued it after she passed away. I never thought I would enjoy art therapy, but the therapist was amazing and I learnt from every session. Each week, I looked forward to every session. They helped me express my fears and concerns, as well as celebrate my wins with me.

“Two years on, I still have contact with Demelza and sometimes attend memory making events. Staff are always welcoming and I get to have much-needed chats with everyone who cared for Rae Rae. These events are very heart-warming and a reminder of how much each child is valued.

“Demelza helped me through a really tough time and continue to be supportive. A lot of my friends and family have said that they would never have stepped foot in a children's hospice if it weren't for Rae Rae. They always assumed it was a sad and morbid place, but Demelza showed them otherwise. Thank you, Demelza.”