My family consists of me (Kelvin), my wife Roz, son Alfie who is eight and daughter Ella who is five and our swan.
Ella is unable to walk, talk or chew, which means that she is PEG fed, lifted constantly and it’s hard to know what is wrong with her at times. She doesn’t like going to bed or being fed by mouth. Ella can now military crawl across the floor. She loves anything sensory, mainly noises and lights, and can get very excited. Watching Ella’s progress no matter how small is huge to me.
We realised that things were going to be different as soon as Ella was born. The hardest thing for me is trying to juggle Ella’s needs and work full-time. I miss her appointments and don’t always get all the details given to me.
We’re not able to do everything normally. Ella can scream down a hotel or a restaurant and it’s difficult to know how she would act somewhere like a cinema for instance.
If I could change one thing it would be that Ella could talk so I knew what she would like or not like rather than feeling like I’m guessing.
Ella is part of the Deciphering Developmental Disorders (DDD) Study and has also recently been enrolled onto the 100,000 Genomes Project, but to date we haven’t received any conclusive results. We hope that they might find a diagnosis so we can look after Ella with more understanding. Having a diagnosis might mean that I’d be able to offer things differently to Ella, but to be honest she is still my beautiful little girl either way.
I feel unsure about the future as she gets bigger and heavier and I get older. In the beginning I felt very isolated but after some time and since becoming a member of SWAN UK, I now know that there are many children with undiagnosed genetic conditions.
We found out about SWAN UK from a neighbour where we used to live. It’s a great interactive network with stories that we can all relate to and a supportive group of friendly people who understand.
This is the first time I’ve shared my story and it feels quite nice. I hope telling my story will help other swan dads as it’s the best way for others to relate.