My daughter Beau has a very rare chromosome disorder called BRWD3. It’s an extremely rare condition, and even rarer in girls.

When Beau was diagnosed, we were given very little information about BRWD3. Like many families affected by rare chromosome disorders, we were left feeling overwhelmed and unsure about what the future might look like. Our geneticist advised us to visit the charity Unique, and honestly, I don’t know what we would have done without them.

Unique supports families affected by rare chromosome and gene disorders by providing information, guidance, and connecting families going through similar experiences. After becoming a member, they were able to send me a contact list for a few other families affected by BRWD3. Through speaking with those families, I’ve learned so much more about Beau’s condition — and I’m still learning every day.

BRWD3 can affect learning, development, behaviour, speech, and daily life in different ways for every child, which is why support and shared experiences are so important for families like ours.

Rare Chromosome Disorder Awareness Day is coming up soon, and it’s something that still isn’t widely known or spoken about. To help raise awareness and support the amazing work Unique does, they are taking part in a “3 Billion Steps Challenge” and need help from members and families like ours.

So I’ve decided to set myself a challenge:

I’m going to walk 10,000+ steps every day for one month to help raise awareness for rare chromosome disorders and support Unique in the incredible work they do for families like mine.

Every donation, share, and message of support means so much to us. Thank you for helping us spread awareness for children like Beau and for all families living with rare conditions.