Mia is nearly 14 now, and over the years she’s gone from strength to strength. What began as a daunting journey filled with unknowns has become a story of grit, creativity, and determination.

Mia was born with CHARGE syndrome, a rare genetic condition that affects various parts of the body, including hearing, vision, balance, and growth. In the early weeks after her birth, we were overwhelmed by diagnosis after diagnosis, trying to make sense of what it would all mean for her future.

Getting her audiology right took time. Mia has a complex mixed hearing loss, and we explored every option. When she was six, she had bone-anchored hearing aids (BAHA) fitted, which have made a big difference. She’s always been an excellent hearing aid user, and that’s really helped her speech and language to develop.

Mia has always been bright and curious. Even from a young age, her love for the world around her was clear. She adored dancing, dressing up, and everything pink.

I became Mia’s advocate. I had to be strong and pushy making sure she had every opportunity available to her in terms of audiology, therapy, support and education. I had to make sure people understood her, that she is bright and able and with the right support will reach her full potential. To be treated like any other child and not held back because of her difficulties.

Auditory Verbal UK has been a lifeline. They believed in Mia from the beginning and worked patiently and skilfully around her vision, hearing, and balance needs. Their support has helped us navigate everything from audiology and speech therapy to EHCPs and schooling.

Like the team at AVUK we have always had very high expectations of Mia and have never underestimated her abilities.

She is about to begin her GCSEs. Getting to this point hasn’t been easy. Mia has worked incredibly hard and never backed down from a challenge.

At times, people have underestimated her because her speech hasn’t always been clear or because she needs a little more time to process information. That can happen when there’s a lack of understanding or training around children with multi-sensory impairments. But Mia is bright and capable. With the right support, she can achieve just as much as anyone else.

Today, Mia is confident, creative, and full of ideas for the future. As a teenager, her passions have grown - she loves art, dance, and fashion, and she dreams of travelling the world and going to university to become an artist. She’s growing into a young person with big dreams and the determination to make them happen.

Claire, Mia’s Mum