Meet the Birkin Family…

Mum of three, Kerry Birkin, clearly recalls the moment she heard that her family had been accepted into Dougie Mac’s children’s services. She says, “I cried for an hour. I could finally see some light at the end of the tunnel. For two years we’d been caring for Louie on our own, struggling to get through each day. Knowing that we were finally getting some help, that there was someone to talk to, was just a huge relief. Without the support of the hospice I don’t think we’d still be standing, we’d have crumbled.”

Two-year old Louie is awaiting a diagnosis for his complicated neurological conditions. His parents knew something wasn’t quite right within the first four months after his birth as he suffered from bronchitis on four separate occasions and wasn’t putting on any weight.

An MRI revealed that Louie wasn’t feeding properly as he couldn’t swallow, so he began to be fed via a tube. However his parents also received the devastating news that the scan had revealed their baby had severe problems with his brain. 

Kerry explained, “The scan revealed that Louie had severe neurological problems and the doctors told us that we had a long road ahead. It was overwhelming, we had so much thrown at us so quickly and it was a huge pressure.”

Louie was also diagnosed with Cowden Syndrome, a genetic disorder characterised by multiple non-cancerous, tumour-like growths and an increased chance of developing certain cancers. He also suffers from severe sleep apnea, which can see him stop breathing for up to 15 seconds at a time.

As he grew Louie couldn’t do the same things that other children of the same age could, but he started to make some small progress. He could wave and murmur some words, including “mama” and “dada”. He began to have some physiotherapy and learned to crawl a little, the family could see that he was making some progress.

Although the family are still waiting for a formal diagnosis, Louie’s doctors have told Kerry and Daniel that they’ve seen other children like him, his condition is degenerative and that they should enjoy every year they have with him.

The family have been supported by Dougie Mac since August 2021 and have enjoyed two respite stays at our children’s site, as well as receiving care in their own home. Louie has also joined our Play as Therapy groups, funded by Children in Need, where he absolutely loves getting messy. During the sessions Kerry realised that he’s more interactive with his feet than his hands, so the Play Therapist has tailored activities specifically for him.

“There isn’t anyone near us with a child like Louie, so coming to the hospice and being able to talk to other Mums, knowing that there are other families going through similar things to ourselves and realising you’re not on your own, is such a huge relief.”

Louie’s older siblings, 6 year-old Meghan and 4 year-old Harry have also enjoyed spending time at the hospice, when the family have visited for short respite stays.

Kerry said, “We were really nervous when we stayed for the first time, as we really didn’t know what to expect. Louie stayed downstairs with the Care Team and the rest of us stayed in a family room upstairs. On the first night I couldn’t settle and I went down to check on him a few times, but I really didn’t need to worry and by the second night I was much more relaxed. One morning I got up first and went down to Louie’s room to find one of the Nurses cuddling him and singing to him. She was so loving and caring with him, it was amazing to see.

“Meghan and Harry also got lots of attention during our stays too, in fact I hardly saw them for two days. Usually they’d be clinging to me but they were so busy doing crafts, baking and enjoying movie nights they were happy to be left to it. Nothing was too much trouble for the Care team looking after them and it gave me and Daniel a much-needed break, a chance to just have a cuppa and a rest, knowing they were all safe.”

Six year-old Meghan has asked lots of questions about Louie’s condition and has found it difficult to understand what’s happening to him, but she’s recently joined Dougie Mac’s Siblings Club.

“The Siblings Club has really helped Meghan, as she’s started to realise that she’s not on her own. She’s enjoyed lots of activities with other siblings and I think she was a bit disappointed when it was time to come home! It’s so nice to see her opening up and learning that it’s OK to worry about Louie.”

“Without the support of the hospice I don’t think we’d still be standing, we’d have crumbled under the huge weight on our chests.”