When Zyan was four years old he was diagnosed with hypomelanosis of Ito syndrome - a rare, genetic condition causing severe epilepsy and learning disability. At this time, mum Penny and dad Nnamdi had no relatives nearby to turn to and this was when she was first put in touch with Demelza.

Zyan is now 14, and things have changed a lot for Penny, Nnamdi and the family in the time since we last told their story.

For one thing, the logistics of caring for Zyan have changed through the years; “He’s a big boy now, he’s a teenager, so he needs two people to lift him which makes things a bit more complicated and things can take longer,” Penny said. There’s also the increased issue of Zyan’s dignity as he gets older – like most teenage boys he isn’t always keen for someone to be undressing him or moving him about when he has other ideas. Demelza are happy to support in moments like these. “He’s known some of the Demelza nurses since he was a little boy,“ Penny said, “so in a lot of ways they’re like family. It’s not like being at a hospital, he doesn’t mind going through these routines with them.”

Short breaks at Demelza

Zyan enjoyed a short stay at the Eltham hospice in December, giving him the chance to spend more time with the care team and get some of his favourite activities in – like playing the Wii and watching films – in an environment specially tailored for young people with disabilities like his. This represented a little break for Penny and the family as well, secure in the knowledge that Zyan was with highly trained nurses who have known him for years, and can keep on top of the specialist care he requires.

Mental health support

As Zyan gets older, Penny and Nnamdi feel the pressures on his mental health very acutely, and it’s a complicated issue; they mention the fact that his school is predominately white, meaning he rarely has the chance to see other black children in wheelchairs like himself. Even despite the fact many children at his school have mobility issues, he can feel left out because most of them have the ability to transition to walking for short periods where he is mostly confined to his chair. “I do worry about his mental health,” Penny said, “because he doesn’t always have the words to express what he’s feeling. Teenagers go through those highs and lows, what you look like, who their friends are… Zyan is experiencing those feelings too, but he can’t necessarily say so. As his mother, I’m very aware of it.”

Zyan’s school is residential, meaning he is away from his family often, so his parents are very involved in making sure he’s included in the sorts of activities other boys his age are interested in. “We spoke with the school about making him goalie when they play football,” Penny said, “because his movement can be very limited, but he should still be included, you know. We don’t want him to be excluded just because he has different needs and abilities, because that will really negatively affect him in the future.”

Zyan is also dealing with all the same physical changes as other boys his age, which can be challenging because of his cognitive abilities. On the one hand, he has a growing interest in girls, and he’s grappling with urges and feelings he hasn’t had before which he can be very vocal about; but on the other hand, he still loves sitting down to watch his favourite shows like Horrid Henry. It can be difficult to balance but Penny and Nnamdi have three teenage boys, Zyan included, so she has experience dealing with this difficult time in a child’s life. “Sometimes when Zyan expresses a thought that’s a bit inappropriate, one of our other boys will say to me, ‘he’s just saying what we’re thinking’ which definitely makes me laugh” Penny said.

“I’m very grateful that Demelza has always been there to talk about things like this. Before the pandemic, when we would pop into the Eltham hospice for a day, I could just sit and have a coffee with one of the care team and they would listen to everything that was worrying me. It’s so valuable having people like that, who are as close to you as family; there’s no judgement, they’re just there to listen.”

That’s where opportunities to spend time at Demelza are most valuable. Penny is hopeful that there will be more chances as COVID-19 restrictions relax for Zyan to come into the Eltham and Sittingbourne hospices, so he can spend time with other children like him in a less structured setting than school – and Penny and Nnamdi can enjoy the company of other parents and carers who know what the family are going through. “Planning weekends with Zyan can be really difficult, they require practically a whole risk assessment,” Penny laughed. “Where are we going, what time are we coming back… it can be very stressful. I’m lost without Demelza, I’d be lost.”

Zyan is smiling and wearing a grey t-shirt and hat.

Transitioning to adulthood

The family are also looking ahead to the future; when Zyan turns 18, he will transition to adult hospice care, which looks very different to children’s hospice care. “It will go by so quickly, the four years between now and then. We’re already thinking about what this transition will look like" Penny says.

Demelza will help support Zyan and his family during the transition phase, liaising with adult hospices to ensure a smooth handover and communicating with the family during the whole process so they feel looked after. They will also have access to peer-to-peer and psychological support to ease the burden during a difficult time.

Demelza continues to offer access to events and activities to families after their transition – so Penny, Nnamdi and the family will still be able to keep in contact and catch up with everyone after Zyan has turned 18.