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Meet Meghan…

Twelve-year-old Meghan Kewley has a very rare, life-limiting genetic condition, Cardiofaciocutaneous Syndrome (CFC), which affects only 200 – 300 people in the whole World.

She also has a brain anomaly, grey matter heterotopia and polymicrogyria. Meghan’s complex conditions cause frequent seizures; she’s unable to walk or talk; and is fed via a feeding pump; she needs 24/7 care.

Meghan’s Mum, Amanda, explains what a typical day is like for the family, “We’re normally awake pretty early, anytime between 4.30am and 6am, and I hoist Meghan out of bed and change her. It’s then time for her medications and breakfast, which she’s fed through a pump. We have a bit of play time, get changed, have more medications and get ready for school. When Meghan isn’t at school, we always try to go out, even if it’s just a walk in to town, as she loves different environments, and it’s important for us both to have a change of scenery.”

Meghan’s condition makes her prone to seizures and spasms which can last from a few seconds up to 45 minutes. Amanda can recognise the signs of Meghan’s seizures and knows when they’re passing, but she also has special medication to help Meghan just in case the seizure doesn’t pass on its own. As Meghan’s seizures often occur during the night, Amanda and her husband, Mike, are used to functioning on very little sleep. Amanda adds, “One of us is always listening out for Meghan as we’re constantly worrying about her. She moves around in her sleep and sometimes gets stuck, so we go in to check on her all through the night which means we never have more than a few hours’ sleep at a time. We’ve just got used to it.”

When someone at Meghan’s school mentioned the possibility of support from Dougie Mac’s children’s services, Amanda and Mike were keen to find out more, especially as they were going through a particularly tough spell at the time. The school referred Meghan to Dougie Mac and one of the hospice’s Care Co-ordination team went to meet the family at home.

In February 2020 Meghan was accepted into Dougie Mac’s children’s service and the family were feeling really positive about the additional support they’d be able to access from the hospice.

Then the pandemic hit.

The family didn’t even get the chance to visit the hospice to have a look around as, like so many families of children with life-limiting conditions, the lockdown started early for the Kewleys when they decided to take Meghan out of school and began to shield at home.

Amanda explained, “Our lockdown basically last for a whole year, because we couldn’t take any chances with Meghan being so vulnerable. The only time we left the house as a family was to go for a drive and a picnic in the car, we had no contact with anyone but we just couldn’t risk Meghan picking up Covid. It was a really scary, and very lonely, time for us and it was especially hard when everyone else went back to school. We felt like the only ones left at home.”

Eventually, as restrictions were lifted and Covid rates began to drop, the family became more confident to mix with others again, and they were finally able to visit Dougie Mac’s children’s services for the first time.

Amanda said, “When we were finally able to visit the hospice for first time we were really nervous and worried about what it would be like and how Meghan would react, but any concerns we had were instantly dissolved. It was so lovely and we felt at home straight away – just the smell when we walked in was really homely. Mike and I even managed to go out for a little walk, just for a few minutes, but it was so nice to just have a little break.”

On their second visit Mike and Amanda they felt more confident to leave Meghan for a little longer. Mike explained, “Meghan was looked after by the nurses and fabulous staff while Amanda and I went to Trentham Gardens. For the first time since Meghan was born we were able to sit in a restaurant and have a meal. We had a lovely few hours to ourselves, which for us is priceless knowing that Meghan was safe and having a fantastic time herself.”

The family has since stayed over at the hospice, with Meghan being looked after by the care team while Mike and Amanda stayed in the family rooms upstairs. Naturally it was a big step for Amanda and Mike, who struggled to leave Meghan for the whole night, but the stay was a chance for them to get a well-needed rest.

“We just needed a break, a few hours of respite. We hadn’t realised how much we needed the rest until we actually had it and for the first time I actually slept for 12 hours. The most important thing was that Meghan was really happy to be there. When we arrived she actually got excited. She was able to have a lovely bath, while the nurses sang to her and she was just really relaxed and content. She also loved the sensory room, she always tries to reach out and touch things, which in there she could as it’s a really safe space for her.”

The couple have also started to benefit from some of Dougie Mac’s wellbeing support services. Amanda has started counselling sessions with one of the hospice’s counsellors while Mike has been invited to join the Dad’s Group, giving him the chance to get together with other Dads going through the same experiences as him.

The couple also joined the hospice’s Parents & Carers Quiz night, with Amanda adding, “It was just so lovely to be doing something that “normal” families do. We’ve never done anything like that since Meghan was born and we’ve been yearning to just do something nice. Meeting new people really lifted our spirits, especially as we were with other parents who just get each other and understand how we feel.”