Meet Ruby…

“Ruby is 18 years old and lives with a rare chromosome disorder called IDIC 15. This means she faces intractable epilepsy and severe developmental delay. Ruby is wheelchair-bound, requires hoisting, needs 24-hour care, is tube-fed and uses bipap with oxygen therapy at night.

“Her condition is life-limiting and in 2014 she was admitted multiple times to PICU, where an EEG revealed she was encephalopathic. It was during this difficult period that we were introduced to the hospice, and I self-referred, which is how we met Tracey, one of the nurses from the Family Support Team.

“Tracey was a tremendous support in that first year, helping us with Ruby’s advanced care plan and even supporting me through practical matters like funeral costs, which was a real fear at the time. Since then, our family has accessed a range of hospice services, including respite breaks, day visits, counselling and sibling support.

“Ruby has two brothers, Tom, 22, and Joe, 16. The hospice has provided support for them as well. Tom, who witnessed his sister close to death, was able to receive counselling, which helped him process his emotions. The boys have enjoyed gaming, watching films and outings without Ruby, giving them much-needed treats and time for themselves.”

In 2025, Ruby was diagnosed with Lennox-Gastaut syndrome, adding further complexity to her care.

“Another aspect that has been truly invaluable is the support from the hospice’s knowledgeable staff. They have guided me through the complexities of both children’s and adult health and social services, making transitions and decisions much easier to manage.

“There is always someone at the end of the phone, ready to help or answer questions and the team is consistently reliable, showing up for meetings about Ruby and offering their expertise and reassurance. This ongoing support has made a world of difference to our family, ensuring we never feel alone in navigating Ruby’s care.

“Initially, we didn’t expect Ruby to transition to the Young Adults Service, as she had a residential placement lined up. However, due to delays, the Young Adults Service stepped in and has offered Ruby day opportunities and overnight respite breaks since July 2025.

“Ruby attends at least once a month and sometimes more if last-minute spaces become available. This has been invaluable for both Ruby and me, as her sole carer, especially since paediatric services withdrew. I can rest knowing Ruby is cared for by staff who know her well and genuinely enjoy her company. She even comes home with her clothes washed, which is a huge help. I wouldn’t leave Ruby with just anyone, but the hospice staff give me complete peace of mind.

“What I appreciate most about the hospice is that it’s about living, not dying. People often express sympathy when I mention we’re going to the hospice, but I explain that Ruby enjoys so many wonderful activities there: foot massages, sensory exploration, long baths, crafts, cooking and spending time with peers. This is especially important now that her school placement has ended and she has no access to recreational opportunities outside the home. Often, I am too exhausted to provide the extras she deserves – so the hospice fills that gap for us.”