Tom's story

Aoife, Tom’s mum, says: “Tom is such a smiley, happy little boy. How I explained things to his big sister Cara is that there is a part of Tom’s brain that doesn’t work in the same way that our brains work, and that means that he’s not able to walk or talk.

“Tom has a really rare genetic mutation, almost like a spelling mistake, on a gene called MORC2. His condition is called MORC2 related disorder and very little is really known about it because the gene itself was only discovered a few years ago. MORC2 related disorder is a spectrum disorder, so it seems to affect different people in different ways. Tom’s neurologist thinks it’s unlikely that he will ever walk or move independently, but he might be able to use a power chair, because he does have some control of his hands.

“But nobody knows anything – we have no idea what’s going to happen, what Tom’s future looks like. It’s weird, part of me likes that because there’s nobody saying there’s something that Tom definitely won’t do. At the moment, I feel like Tom will show us what he’s capable of.”

One of the most important things Aoife has found at Demelza is a community of people who understand.

Aoife explains: “Going to typical baby groups was hard for me – things were still quite raw, and Tom had an NG tube at that point which really highlighted the contrast between Tom and the other toddlers. So being able to go to Demelza instead was lovely.

“For me, it’s so helpful having people around who are all at a similar stage trying to navigate similar things in the system – it really means a lot. You can ask questions and see if other people are experiencing similar issues, everyone just shares tips and advice.

“Being a parent is always going to be hard – it’s a slog! But we’ve got another few extra layers which makes it a bit trickier. With typically developing children, as they grow up and get more independent, it gets easier, but as Tom gets bigger it’s going to get harder. Friends who don’t have kids with complex needs will obviously try and understand as much as they can, but they don’t really know the depth of it, whereas with another Demelza mum, you don’t have to explain - we all know. It’s just so nice to have somebody to hang out with who understands all the trauma. And it’s great that Tom has little buddies to hang out with as well, there’s like a little boys’ crew now.”

As well building community, Demelza has been supporting Tom’s ongoing development with creative therapies.

“We have music therapy at home, which is great for Tom in terms of motor skills, learning to be able to control your hands and arms. And his responsiveness – during the sessions Tom will make noises as if he’s having a conversation, and if they start singing a song he likes he’ll smile and be really happy, it’s definitely having a good impact. Music therapy can be expensive to fund privately, especially with someone experienced in working with children with complex needs, so that’s really great.”

Tom has also stayed at Demelza, giving Aoife a much-needed break from round-the-clock care.

Aoife says: “After a couple of months of attending Dots, we had our first overnight stay at Demelza. It was such a relief knowing he was with people who understood his needs, and that he was going to be looked after exactly like I would do at home. The first night I stayed at Demelza too – I went out for a pedicure, and then I just got into bed and watched telly with a glass of wine and a jacket potato. It was lovely! I spent the next night at home – it was weird not having Tom there, not having to do the feeds and everything else he needed – but we could relax.”

Demelza has also provided support to make sure Tom could be part of the really special family moments.

Aoife says: “Demelza looked after Tom on the day of our wedding. We got engaged shortly before Tom’s diagnosis, and we were planning a big wedding a couple of years later, but with his diagnosis it just felt so far away and there was too much anxiety about what was going to happen. Obviously, we really wanted him to be there. We decided to do something a little bit smaller, but I was really worried about who was going to mind him. But Demelza was amazing, we were very lucky – Tom stayed overnight that weekend, the care team got him ready and took him to the registry office, looked after him during the ceremony, and took him to the reception so he could be in the photos. Having them there – it was such a weight off my mind, knowing that he was looked after, especially by someone who knows him so well.

It's not just about supporting Tom – Demelza is there for his sister Cara too.

“Cara also has a great time with Demelza. I’m hoping she keeps on going to sibling activities as she gets older, so that if she needs that support, it’s there. As children grow up they start to notice difference more between themselves and their peers, so having other children around who know what it’s like will be really important for her.”

Life with a child with a complex condition often means being a carer as well as a parent, but for Aoife, Demelza is a place where the whole family is taken care of.

Aoife says: “I spend most of my time looking after other people, so it’s lovely when you come to Demelza and they look after you. They’ll offer you a cup of tea, the kitchen has normally made an amazing cake, and they’ll give us lunch, so that’s one less thing I have to sort. To have somebody taking care of us for a little while is so nice. We would genuinely be lost without the support. If you were to take out all the things that Demelza supports us with, there would be a massive hole in our lives.”