Mia is about to celebrate her 5th birthday; she is a bright, social and determined little girl who has defied all the odds. Mia was born with CHARGE syndrome, a rare genetic condition that can affect different parts of the body; the most common problems are with the hearing, vision, the heart, airways and growth.

Only a few hours old and having trouble breathing, our local maternity hospital in North London had concerns about Mia’s heart. She was rushed to Great Ormond Street Children’s Hospital (GOSH) for further investigation. The cardiac intensive care unit doctors discovered Mia had a life threatening heart defect called Transposition of the Great Arteries and she would need major open-heart surgery to fix it. At two days old we met with a lovely geneticist by Mia’s bedside who explained to us she had many clinical features of CHARGE syndrome.  More investigation was needed, but it became clear that Mia would have many challenges ahead of her. At 4 days old Mia underwent open-heart surgery to correct her heart defect. Her recovery was textbook and after 11 days she was discharged. Overjoyed and traumatised all at the same time we took our beautiful daughter home, knowing this was just the start of our journey.

In the coming weeks we learned that Mia was severely visually impaired, severe to profoundly deaf, had missing semi-circular canals (the balance organs in her inner ear) meaning she would struggle to learn to walk and had problems with her swallowing and breathing. It became clear Mia was a multi-sensory impaired child; her vision, hearing and balance were all affected. Each one of her senses impacted on the other and this complex condition needed careful management. After weeks of being bombarded with long lists of serious medical diagnosis our whole family were in shock. We began to think about what the future held for Mia.

I was particularly upset about her vision, as I couldn’t imagine what it would be like to not see properly. Despite the severity of Mia’s hearing impairment, this diagnosis didn’t seem to worry me as much. Maybe it was the softly spoken audiologist at GOSH who reassured us there were lots of things they could do for Mia’s hearing. Or maybe I saw a beautiful baby who kicked ass when it came to major open-heart surgery; a little superhero who could defy all the odds placed before her.

Mia has had a lot of ups and downs. We have spent countless times at hospital with multiple admissions, procedures, screening, scans and therapies. We were lucky to have a strong team of health professionals supporting us at GOSH and working with us locally. With lots of hard work and determination, Mia slowly started to learn to live with and overcome many of her health problems.

It was a hard journey having a child with complex needs. Mia has many medical conditions we had to learn about. I spent a great deal of time researching each one, finding resources and organising assessments and therapies. Dealing with such a large team of health professionals, at times, has been difficult. There were often conflicting views about what was best for Mia. Sometimes I struggled to hold on to my gut instinct about what was right for my child. Health professionals would change and we would have to get used to working with new personalities. People varied and despite getting on with everyone and appreciating their help, I had to learn diplomacy and how to get my wishes across without disparaging anyone’s advice.

Mia was first fitted with hearing aids at 8 weeks old. It took a while to get her audiology right due to her complex mixed hearing loss, practicalities of a baby wearing hearing aids and difficulties testing such a young child. Once Mia’s speech started to develop it was easier to test her, understand where she struggled to hear and making sure her hearing aids were programmed correctly. We have explored every avenue available to us like ‘bone anchored hearing aid’ and Cochlear Implants. However Mia has always tested best with hearing aids, despite struggling with high frequencies. She is an excellent hearing aid user and this has really helped her develop her speech and language. At times some people have underestimated Mia’s ability to develop speech because she struggles with her clarity or needs more time to process information. Perhaps this is partly due to a lack of training about children with a multi-sensory impairment, the impact this has on development and the strategies needed to help support the child.

I became Mia’s advocate. I had to be strong and pushy making sure she has every opportunity available to her in terms of audiology, therapy, support and schooling. I make sure people understand 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. To be independent and given every opportunity to develop and learn.

We have a great local team. Mia’s teacher of the deaf, visual impairment teacher, local speech therapist, auditory verbal therapist and local mainstream nursery school are so supportive and work hard to make sure Mia reaches her potential.

Auditory VerbalUK have been amazing. They have never underestimated Mia’s abilities. They have worked with Mia’s multi-sensory impairment and adapted her therapy to take into account her vision, hearing and balance difficulties. Mia’s auditory verbal therapist has supported us with getting the right audiology, schooling, local speech and language therapy and Education, Health and Care Plan. Combining auditory verbal therapy with our local speech and language support has really pushed Mia's speech along, closing the gap in her speech delay and getting her ready for mainstream school in September.

We have very high expectations of Mia and have never underestimated her abilities. Mia has made amazing progress. Her speech and language is almost age appropriate and she is very happy, social and confident. Despite having to work four times harder to walk, talk, listen and learn, Mia is keeping up with her peers and going from strength to strength.