Meet Kieran…

Fourteen-year-old Kieran was diagnosed with Friedreich’s Ataxia (FA) in 2017, just before his 7th birthday. The condition is a life-changing, life-limiting, degenerative neuromuscular disease which affects his balance, co-ordination and muscle strength. There is currently no cure.  He also has Hypertrophic Cardiomyopathy – where the muscles of his heart are abnormally thick, which makes it harder for his heart to pump blood around his body contributing to his fatigue. Kieran also has pes cavus, which have made his feet turn inwards and lead to his loss of mobility.

When his paediatrician suggested that Kieran be referred to a children’s hospice his Mum, Leeann, was in complete shock. She explained, “HOSPICE! It was the word ‘hospice’ that got to me. The idea that Kieran needed a hospice already was such a shock. One I couldn’t acknowledge or deal with at the time, so, I chose to ignore it.

“Two years later and hospice care kept cropping up in conversations and appointments at the hospital. I was still very reluctant until I had a discussion with Kieran’s clinical psychologist who explained that a children’s hospice was not just end of life care (which was what I assumed) it was support not just for Kieran but the family too! So, at the end of 2019 Kieran was referred.”

Leeann and Kieran met with one of the Care Coordinators to discuss their circumstances and a short while later Kieran was accepted into Dougie Mac’s Children’s Services.

Leeann added, “I was still a little dubious and quite anxious, so Kieran’s Nan and I went to look around the hospice. It’s an amazing building but more than that, the love, warmth and care emanating from every person inside was incredible. The facilities are incredible – a music room for music therapy, a huge art/fun room, a teenage room full of video games, that any gamer would love. Plus a huge outside play area with fully accessible swings and play equipment. The list is endless.

“We arranged for Kieran to visit to look round and try out the play, art and music therapy and then Covid hit and unfortunately, Kieran didn’t have the chance to look around as the hospice was closed to any non-essential care.”

Although Leeann and Kieran couldn’t visit the hospice, they continued to receive care and support through virtual channels. Maria, our children’s counsellor began weekly online well-being video calls with Kieran, while Nikki, our play co-ordinator, started teaching him Makaton online, with the signs for pizza and burgers being his particular favourites!

And it wasn’t just Kieran who benefitted from this support, Leeann added, “I’ve also received some fantastic support from the adult counsellor who has provided me with someone to talk to about the challenges of being a single mum with a disabled child. Our Care Coordinator and social worker have also been invaluable sources of support and information.”

Four years on and Kieran and Leeann continue to be supported by Dougie Mac’s Children’s Services especially through multiple challenging surgeries for Kieran.

“Kieran needed surgery to lengthen his tendons and reposition his feet. Post surgery was a really difficult time for Kieran, he was incredibly uncomfortable which had a huge impact on his mental health and he was really struggling. It’s been a really long process but Maria has been fantastic and she’s also helped me to get additional support for Kieran through CAMHS.”

In August 2023, Kieran required spinal surgery for scoliosis, but due to various complications and failed surgery attempts, Kieran’s operation only went ahead in March 2024.

“Dougie Mac supported me throughout the whole process. It was an extremely stressful time but I only had to pick up the phone. Kieran was extremely uncomfortable as he couldn’t sit properly in his wheelchair. Thankfully the hospice paediatricians were able to help manage Kieran’s pain, while physio, Gemma, was also able to liaise with wheelchair services to make suggestions about ways to make Kieran’s wheelchair as comfortable as possible.

“The surgery made a massive difference to Kieran and he’s much more comfortable now. His mental health has improved too, he would be in a completely different place without the fantastic support he’s had from Maria, she’s also helped him deal with his emotions around his failed surgeries and all his relentless hospital appointments. She’s continued to see him regularly since his surgery and even goes to his school to meet him, fitting in with his timetable so he’s not missing core subjects.

Kieran has also been able to enjoy respite stays at the hospice and his overnight stays are chance for Kieran and Leeann to have a break.

“One night respite is enough for both of us. For me, it’s a chance to just have a lie in and have some time to myself without rushing around. Kieran loves joking and playing games with the care team, Nikki has taught him to play chess; she plays a tough game and certainly challenges him!

“The parent wellbeing is incredible too, just being able to have a facial or a relaxing sound bath to help me chill is priceless. I’ve also continued having regular appointments with one of the counsellors, I see him every other week and I can talk about anything. He’s helped me to realise that I’m important too, I need to have time for me and he helps to reassure me that I’m actually doing a good job in juggling everything. I don’t know where I’d be without this support, it’s been imperative for both me and Kieran.”