UCD 2021: JENNI’S STORY

Jenni looks back at her family’s journey.

SWAN UK is 10 this year. 10 years ago we were starting our journey into the unknown.

10 years ago

10 years ago Roo was just a few months old and undergoing many tests to find out why he was severely delayed along with his large head.

When test after test came back with nothing conclusive we felt very alone. No one could tell us what was wrong with our son. No one could tell us what his future would hold. We were simply told that he had brain abnormalities and that he wouldn’t be able to walk, talk etc. We didn’t know anyone who was in a similar situation so we carried on the journey all alone as we didn’t fit in anywhere.

Finding SWAN UK

Nine years ago my mother came across an article in the newspaper about a little girl called Jess who was a swan (also known as syndrome without a name). Curious, I immediately went on the internet to search for more information. That’s when our journey started with SWAN UK.

Finally there was a place we could fit in, a place where we found many other families in the same situation as us. No longer were we alone on our journey. We had somewhere we could talk about our concerns, worries, share our feelings of navigating this journey, sharing the ups and downs of raising a child with complex needs. We learned so much from others about therapies, treatments, tests as many professionals didn’t know what to suggest so often we would mention what others had said. As a result we became the advocates for Roo, educating the professionals along the way.

Now SWAN UK celebrates its 10th birthday this year!

They are not just a support network, they are a lifeline for families like ours. They make us never feel alone anymore. They opened their arms and welcomed us all like family. They are there every step of the way on our journey.

Getting a diagnosis

Even now with Roo getting a diagnosis after being on the DDD (Deciphering Developmental Disorders) study for four and a half years. When we were told about Roo’s mutation and how he was the only child in the world with his exact mutation even though there were seven other children at the time with the mutation, they simply didn’t know if this was the reason for all of Roo’s difficulties. No other charity in the world has any information about Roo’s mutation … not even Unique. There are no support groups, no internet pages about it, only some research papers. We have been told we just have to be patient and wait until more research has been done which will be years.

Finding a community

The SWAN UK community were there to help my worries when I got pregnant with Fox, Roo’s younger sister. When she was born all seemed ok until at six weeks of age we were told she had some delays which concerned them. I felt like my world was in turmoil as we were faced with the prospect of having two swans. But after genetic testing and therapies, we found out she actually had a rare syndrome of her own – Waardenburg Syndrome.

It is thanks to SWAN UK who encouraged me to set up this blog so that we could share our journey. As well as the blog they helped with encouraging us to have a Facebook page linked to the blog to help raise awareness. It is because of this that I have had five families reach out to me whose children have the same mutation as Roo.

SWAN UK has a saying ‘once a swan, always a swan’ so we are still a part of the community. They are still our support. We have been lucky to go on an outing organised by them and enabling us to meet the other families face to face after years of chatting on Facebook groups! We hope to go on many more in the future once this pandemic goes away.

Happy Birthday SWAN UK … thank you for everything you do to raise awareness about children like ours.

As published at: rainbowdust2.blogspot.com.

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