UCD 2021: Angel and Soldier

Happy Birthday to you

A wonderful crew

Happy Birthday dear SWAN

Without you what would we do!

Who are they? Those that know me don’t need to ask. My best friend even ran a marathon for them. When you have an undiagnosed child (or two like us) this charity is a lifeline. Set up by Genetic Alliance UK, recognising that half of children with genetic conditions never get a diagnosis.

Why a lifeline? Imagine your child misses all their milestones, they stop breathing half the night, they are regularly in and out of hospital but no one knows why. You embark on a series of tests, too many to mention eventually leading to research studies in the hope of understanding what has happened and more importantly what the future looks like. But no one knows. This was our journey with Angel and Soldier! It’s a lonely lonely place. Long term friends and friends made through baby networks are all walking a different path to you.

Finding SWAN UK over eight years ago was like finding a family. Their Facebook network is a world of wisdom. So many other families all in the same place on an unknown journey. When your mind is racing in the middle of the night there is always a SWAN UK brother or sister online to help.

What do they do? The best Facebook group ever! Meetups where those virtual relationships become real. Unofficial SWAN UK mummy weekends, time to let our hair down and really bond. Friends for life working with professionals to educate them on what it is like for parents of undiagnosed children, living everyday with the unknown

Once you are a SWAN UK family you never leave. It’s the most supportive, non judgemental place we have found. The SWAN UK team work very hard to develop, protect and grow this wonderful culture.

We now know the gene flaws Angel and Soldier have, identified by a research study at the Sanger Institute, but we still have no idea what the future holds … so things really haven’t changed that much … We still turn to our SWAN UK network regularly and share our journey and tips with other swan families.

Happy Birthday SWAN UK! You have made a massive difference to the lives of families like ours. Here’s to the next 10 years.

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