“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."
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Support for the whole family.
"As things began to open back up in 2021, we were thrilled to be able to take advantage of Demelza’s daycare sessions as we’d hoped. Dropping Matilda off at their Kent hospice, where she was able to enjoy a fun day of activities with the care team, gave us the chance to grab some much-needed quality time with Dominic. We took him out for some back-to-school shopping, a round of bowling, and a nice lunch – maybe it sounds really boring and ordinary but it just wouldn’t have been possible without Demelza.
"Matilda can’t do noisy, crowded places because overstimulation is another thing that sets off her seizures, so shopping centres and bowling alleys are basically off-limits. It was really special. Dominic got to enjoy a day that was all about him, Matilda got to do arts and crafts and other fun activities at Demelza, and we could all enjoy a little while without worrying for a change.
"That quality time with Dominic is important to us. He’s very anxious because he was around when Ayla died and he understands how serious her condition is, so he has trouble doing things separately from Matilda now. What’s great about Demelza is that he’s able to enjoy more activities – both with Matilda and without her – that wouldn’t have been possible before.
Using the hydro pool
"The hydro pool at the Kent hospice is a great example. Public pools go the same way as shopping centres for our family; it’s all too noisy and chaotic for Matilda, and it drastically increases the chances of her having a seizure. If that happens, I have to get her out of the water quickly which is really difficult if you’re surrounded by strangers who don’t understand what’s happening. Dominic would often end up leaving the pool as well because he’s worried about her, so it all just ends up being horribly stressful and before Demelza, we didn’t often go swimming as a family.
"With Demelza’s hydro pool, things are so much easier. You have a trained healthcare professional at the side in case you need anything, the air temperature and the pool are nice and warm, and they have suitable facilities for us to actually get changed with a disabled child. That’s a much bigger deal now as Matilda is getting older and heavier – she doesn’t have any real mobility, and she can’t walk or crawl or put any weight on her legs. There aren’t many public pools that can cater to a three-year-old who can’t walk, as they expect them to be able to hold their own weight at this point, so the seating and baby-changing facilities often aren’t what we need. It makes a big difference being able to book a pool just for us and knowing that we don’t have to stress about the practical side of things when we get there.
"Liz (Demelza Family Liaison Practitioner) has been so great to work with as well. I don’t think a lot of people understand that the second something is tailored for special needs or a child with a disability, the cost just skyrockets. Liz sat down with us and figured out where we could get grant funding for different things, and she helped us fill out paperwork and get it signed off by the relevant people. It’s a massive load off our shoulders, knowing that Matilda is getting what she needs but we don’t have to foot the cost of all this specialist equipment.
"Overall, we’re just really grateful for having Demelza in our lives; knowing they’re there if you need them, and that they’ll be flexible around your needs instead of the other way around, makes a huge difference."
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