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Charlie’s Story

Charlie

In 2011 my husband and I were excited to welcome our second son into the world. When he was born and placed onto me I noticed his little ear and a large skin tag on his cheek. The doctors and midwives could not tell me how this had happened to Charlie, or even give me a name for what it was. The midwives took him to see the doctors, but no one had an answer. We left the hospital with so many questions. I went home that evening and Googled ‘small ears’, and that mentioned ‘microtia atresia’, and we believed this was what Charlie was born with. We had never heard of microtia before, so we researched for answers online until the doctors confirmed that Charlie did in fact have microtia atresia and hemifacial microsomia at around 1 month old.

The doctors reasurred us that Charlie did not need a hearing aid as his bigger ear worked perfectly fine, and that it would compensate. We agreed with them as we didn’t know any different, we didn’t know we had options, and we hadn’t seen a hearing aid before. The first year of having Charlie was quite overwhelming. I constantly wondered about his future and what this all meant for Charlie. It didn’t help that at every appointment it felt like no one had seen a baby with microtia before, and other doctors, nurses or students would join the appointment to look at my son. I didn’t mind, I thought it would help raise awareness, but I also struggled with this new life we were leading. Thoughts like if his microtia would affect his speech went through my head, how many appointments will he need, is visiting the hospital every few weeks our lives now, would he be bullied at school, will he find love… I wish now that I could go back and tell my younger self that everything will be fine and to not worry so much!

Years later we found the Microtia Mingle UK Support Group on Facebook which made me feel like I wasn’t alone. Microtia UK have given Charlie, myself and our family answers to questions, they’ve offered guidance and advice, and enabled us to meet others with microtia too. At one of the Microtia UK events in London, Charlie (aged 5) was able to try on a BAHA for the first time. His face lit up as he told me and my husband that he could hear us in both ears! There was no doubt then that we would request a BAHA and give Charlie hearing in two ears!

Charlie’s request quickly became a reality when he was given his BAHA on a headband. He loved the new sounds it gave him, but disliked wearing the band. A year and a half after first receiving it, Charlie underwent an operation to have the BAHA Attract. A magnet was screwed to his skull, which sits under the skin. Charlie now chooses when he wants to wear his hearing aid, and he says it gives him better sound than wearing it on a band. After healing, Charlie went to the hospital to re-programme the BAHA, and when we left he turned to me and said, “Mummy, the wind! I can hear the wind!” For Charlie, it was like having new hearing all over again. A moment I will never forget. I knew then that we had made the right decision.

Charlie has acheived so much! At aged 8 he was a model for the Zebedee Modelling Agency. He had a casting for Cbeebies, and did a catwalk show. At aged 10 he had the amazing opportunity to act alongside of Michael Auger, from Collabro, where he did many Peter Pan shows on stage for the Christmas Panto season. He has also won competitons, taken part in testing toys for our towns shopping centre, he has been on the national and local news channels, he’s been in our local papers, and most recently he has signed up to a local football team.

Charlie is very proud to represent Microtia UK by speaking at events in front of upto 200 people. He will share his positive thoughts and feelings about his microtia, and is happy to talk to anyone. Charlie loves raising money for the charity and has currently raised over £3,500. He enjoys acting, dancing, singing, football, computers, gardening, but most importantly, raising positive awareness in his every day life. He has a lot of friends and shines with confidence in all aspects of his work. Charlie proves that if you put your mind to it then anything is possible! Microtia does not stop you from doing anything.

We now have 4 boys in total and Charlie is the only one with microtia. He knows how super special he is!

Charlie's story in his own words...

“My name is Charlie and I’m 12 years old. I was born with left sided microtia. Originally the doctors didn’t know what had happened to my ear, but later my parents discovered it was a condition called microtia. Even though I was born with microtia, it has never stopped me from achieving my goals or stop me from making friends. Growing up was sometimes difficult with questions frequently being asked about my ear. I used to get frustrated with all the questions, but now I realise people are only curious about my ear and I have grown in confidence a lot since I was younger.

One of my hobbies is football, but it has been hard playing football and other sports with microtia because I get underestimated of my ability in sport due to my condition. But when I show my ability in some sports, people quickly come to realise that I’m just as good as anyone else and microtia doesn’t affect me as much as some people might think.

I’m happy as I’ve ever been. I have lots of friends and most importantly I’m confident in myself. I want to spread positive energy in hope that other people do not feel scared to be themselves, even if they have microtia or any other condition or disability. It is important to be confident so you can achieve your hopes and dreams.”