“I was referred to Demelza six years ago with my first daughter, Ayla, as she had severe epilepsy which resulted in five intensive care admissions in the first year of her life. At that point, we weren’t looking for end of life care, but support in caring for Ayla given her severe condition and lack of official diagnosis; we even had an initial meeting with Demelza to talk about what that support would look like for our family. However, Ayla’s condition suddenly worsened and within a few days of that first meeting, she succumbed to her condition and passed away. She was only one year old – we were heartbroken."
Matilda and Ayla's mum, Lisa, shares their story:
"There’s no way to describe how hard that time was on our family, especially on Ayla’s big brother Dominic, but in time things did start to look better; we started to think that we were through the worst of it. However, when my beautiful baby Matilda was born in 2018, it quickly became clear to us that our difficult road wasn’t behind us yet. She had a lot of health problems, including severe epilepsy similar to Ayla’s – she might endure up to eight seizures a day, and the worst ones could land her in hospital for extended periods.
"After a period of genetic testing, doctors discovered a mutation in her CRELD1 gene, which was found to be the cause of her constant seizures – Ayla was diagnosed at the same time as Matilda, as we kept her blood sample at the hospital. It’s an extremely rare mutation, and there are only four children in the UK known to have had this; sadly, my daughter Ayla and another little girl affected by it passed away before turning two. Discovering that Matilda had the same condition that had taken Ayla away from us, we were thrown back into the whirlwind of appointments and referrals we thought we had left behind. Eventually, Matilda was also diagnosed with Brugada syndrome, a rare and serious condition that causes severe heart complications. It’s likely given their similarities that Ayla shared that condition as well; it was truly a nightmare to be right back where we were two years before."
Accessing Demelza's services.
"Because of our experience with Ayla, we wanted to get Matilda a referral to Demelza as early as possible. We knew that they offered services that would improve not just Matilda’s quality of life, but also our family life; particularly the daycare sessions, which would give us a chance to focus on Dominic’s needs while Matilda was being cared for by highly skilled medical professionals. In 2019, when Matilda was still a baby, we were put in contact with the Demelza team again.
"We were offered a tour of the Kent hospice, and we were laying plans for our first overnight stay; things felt like they were really progressing. Then another disaster struck – COVID-19 and the nationwide lockdowns that followed. Because of Matilda’s vulnerability, our whole family was advised to shield, yet it felt like the goalposts had been moved on us. Demelza was fantastic during that difficult time at checking in with us to see if there was anything we needed. We were offered practical help like collecting prescriptions and grocery shopping, but also generally they made sure we were coping with a totally unprecedented way of living. Lockdown was difficult, but Demelza made it easier."
Support for the whole family.
Finley, who has cerebral palsy and cannot speak and is registered blind, uses Demelza’s Kent hospice for short breaks every summer. Read more about Finley's diagnosis and the services he accesses at Demelza.
Mohammed Yahya’s story
"We were told about Demelza – and said this was a place that could give Mohammed Yahya the care he needed. We cannot describe the feeling of utter relief, the weight falling away from us." - Jamila and Abdul, Mohammed Yahya's parents.