Before this, we had no idea that around 6,000 children are born each year with undiagnosed conditions. It took us a long time to begin to accept this, and it is something we still struggle with. The unknown can feel overwhelming.
Freya’s story
What is it like to go for years no knowing what is wrong with your child? Read Freya’s story.
We first began to notice a delay in Freya when she started nursery. Simple milestones such as walking, talking and potty training came later than expected. At the time, we compared her to her older brother, who had been very advanced — something we later realised wasn’t a fair comparison. Even then, we knew Freya wasn’t ready to start school, and we made the decision to hold her back a year.
No answers
As the years went on, we raised concerns about Freya’s mobility and speech on many occasions. However, we often felt dismissed. We were told she was ‘just very bendy’, ‘lazy’, or that it was simply because she was the youngest and on the smaller side. Like many parents, we questioned ourselves at times and wondered if that might be true.
When Freya started school, it was during the Covid-19 lockdowns. It was during this period, watching her learn at home, that we both began to realise there was more to her difficulties. She struggled with many aspects of learning, yet again we were reassured that this was to be expected given the circumstances.
Around this time, Freya also began to fall more frequently and was often described as ‘clumsy’. It wasn’t until November 2022, when her mobility noticeably declined, that our concerns were truly listened to. At that point, we felt a mixture of worry and relief — worry about what this might mean, but relief that we might finally begin to get answers and access the right support for her.
What we didn’t realise then was that this journey would still be ongoing three and a half years later.
It never once crossed our minds that we might not receive a diagnosis. Over time, various conditions were considered by medical professionals, but each time tests came back without answers. Being told that we may never know has been incredibly difficult to come to terms with. There were many tears, and a deep sense of uncertainty about what this means for Freya’s future.
Finding SWAN UK was a turning point for us. At a time when we felt lost, it gave us something we didn’t realise we needed so much — hope, understanding, and a sense of belonging. Knowing that there are other families on similar journeys has made us feel less alone.
We still experience a wide range of emotions — anger, frustration, sadness — but we are no longer facing it in isolation. The support, community and resources SWAN provides have helped us navigate what can often feel like a very uncertain path.
Freya
Freya herself is the strongest, most positive little girl we know, and we are incredibly proud of her. She speaks openly about her “wonky legs” and proudly shows her ‘bald spots’, handling everything with a confidence and resilience that inspires us every day.
She has been learning about what it means to be undiagnosed and wanted to share this with her school friends. Undiagnosed Children’s Day is something she proudly calls ‘her day’ — a day for her, and for others just like her.
Freya wanted to do something positive, not only to raise awareness, but to give something back to the community that has supported us. She has decided to take on a sponsored walk/wheel of around 6km at our local park, raising funds for SWAN UK and awareness for undiagnosed children everywhere.
SWAN UK has been there for us during some of our most difficult moments, helping us find light when things felt very dark. We will always be grateful for the support they have given our family.
If you would like to join the SWAN UK community please click here to complete a short registration form.