A bereaved dad has spoken of the “endless knowledge, kindness, positivity and patience” of children’s hospice staff who cared for his daughter. Daisy Low-Martin had a rare condition called Carey-Fineman-Ziter Syndrome (CFZS).
It led to complications that caused a brain injury when she was just two months old and she sadly died in September 2019, aged seven. Daisy and dad Leo Martin were regular visitors to The Treehouse, in Ipswich, and Leo says he will always be indebted for the support they received from East Anglia’s Children’s Hospices (EACH).
They created magical, precious memories and he knew his daughter was always in the best possible hands.
“Daisy had complex needs and required 24-hour specialist care,” said Leo, who lives in Saxmundham.
“It was a steep learning curve in the first couple of years and there was so much to do and learn. However, we were lucky to have an incredible team of nurses and carers and I’m forever grateful for their seemingly endless knowledge, kindness, positivity and especially their patience, in such difficult circumstances.
“I remember the first day I went to The Treehouse. I didn’t even know a place like that existed. It was so well equipped and the staff were incredibly welcoming and kind. They were wonderful and work tirelessly.
“They obviously knew far better than we did about the emotional journey we were starting, but they gave us space to come to terms with it. Daisy absolutely loved it and I enjoyed going there, too.
“Some of our best days were at the hospice and the difference it made to our lives was massive. I’ll always be grateful for everything EACH did and to everyone who works behind the scenes to make that support possible.”
Leo remembers his daughter as a “very happy and chilled out little girl”.
He recalls countless fun times together and describes her death as “devastating and unbearable”.
“We used to love playing with toys that were squishy or lit up, but our favourite thing to do was to snuggle up on the sofa and read books,” he said.
“I’d do voices for all the characters and we’d do all the actions. It’s hard to express just how devastating it was losing Daisy. She was my everything.
“The pain of losing her was unbearable and I didn’t think I’d be able to go on. I didn’t see a point in my own life anymore. I tried my best to keep it together for the people around me and just spent a lot of time alone, crying.
“It’s only now I can handle talking about her without breaking down, and even now that’s not always the case. Losing her destroyed my life and it’s only now that I’m starting to get back on my feet.”
In terms of the future, Leo has thought of a way to give something back. He says he does not have many high-quality photos of Daisy and now, as a keen photographer, he is offering his services to other families being supported by EACH.
“During our time at The Treehouse, we enjoyed sessions with (Music Therapist) Ray (Travasso) and he always told me that finding something I can passionately immerse myself in would help me,” said Leo.
“He was right and, for me, it’s photography. It’s probably saved my life. As I get more and more involved, I’ve come to realise that all the photos I have of Daisy are low-quality phone pictures and/or selfies. None are of particularly great quality.
“I’m sure that must also be true for so many other parents going through similar things to me so plan to offer professional family portraits.
“It’s a service I’ll be offering totally free of charge. I can come and visit them at home or in the hospice, they can dress up in their best clothes, we’ll do the photoshoot and then I’ll print and frame their favourite photo of the day.
“This way they’ll always have one great picture to hang on their wall. It’ll be my way of giving back to EACH, for all the support it provided me. I dearly hope it would benefit other families receiving support, too.”
