Meet Kieran…

Eleven year old Kieran was diagnosed with Friedreich’s Ataxia (FA) in 2017 when he was just 6 years old. 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 has Hypertrophic Cardiomyopathy – 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 and his feet are starting to turn inwards, making it impossible for him to walk”

When his paediatricians 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 Co-ordinators to discuss their circumstances and a short while later Kieran was accepted in to The Donna Louise’s care. 

Leeann added, “I was still a little dubious and quite anxious, so myself and Kieran’s Nan 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. A little overwhelming and quite emotional! 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 return to look round and access the play, art and music therapy and I was looking forward to some grown up well-being care! Then Covid hit and everything was up in the air. Unfortunately, Kieran never ever got a chance to look around! He was shielding at home and 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 Jane, the adult counsellor, who has provided me with someone to talk to about the challenges of being a single mum with a disabled child, in lockdown. Our Care Co-ordinator and social worker have also been invaluable sources of help, support and information.”

Over the past year Kieran’s mobility has really declined, so much so, that he can no longer walk unaided at all. His family are waiting for him to be able to have surgery on both his feet, to help with his mobility.

Despite this, last summer he bravely took on the Virtual Conqueror Challenge covering the equivalent of the Inca Trail in Peru on his trike. Over 4 weeks he cycled more than 42km, doing between 2 and 3 km most days depending on his fatigue levels, and in between online school lessons and his various clinic appointments and physiotherapy sessions. Incredibly he raised a fantastic £1,236 for the hospice.

The even better news is that Kieran was finally able to visit the hospice for the first time at the end of July and he absolutely loved it. He had a tour of all the facilities and couldn’t wait to visit again to have more fun.