My Personal Journey ...
how it all began
Aqil wasn’t totally deaf but he was born in a period where MA was still considered an unfamiliar medical condition. The medical professionals in town said he wasn’t a candidate for surgical treatment since he could forcibly hear in one ear. Yet, he struggled with speech impairment due his limited hearing within the first 6 years. He was caught in between ‘single-sided deafness and normal hearing’. His underdeveloped pinna was called ‘deformed earlobe’. The absence of an ear canal was not mentioned. For the longest time, we assumed that if pinna reconstruction was done, his hearing would get better. Ignorance, on our part. Unfortunately, the quoted surgical cost was very expensive and we did not have the means to do so. In the end, due to his inability to form proper words, Aqil just stopped talking at the age of 4 and resorted to pointing. His struggles became ours. His level of confidence crashed due to the inability to communicate. After much considerations, we decided to send him to a private school (at the age of 7) only because the classes were smaller and the teachers were very experienced elderly educators. Aqil was placed in-front of the class and the teachers were made aware of his conditions. With Allah’s grace, within a year, Aqil bloomed. When he was able to hear his teachers well, he was able to emulate the words, form sentences and create dialogues with the people around him. We knew that this was the best academic and social surrounding that we could possibly give him. Our son was finally talking. We as family were finally communicating with each other. What a blessing.
Our son is now 25 years old and he had completed his BSc (First Class) in Computer Science (IUMW), Master in Criminal Justice (Universiti Malaya) and is currently embarking in developing his own website building/event management company prior to continuing his doctorate next year. As a family, we too, have come a long way. We now know better of these deformities. They have a name – Microtia (deformity of the pinna) and Atresia (absence of ear canal). When you know the name, then you can surf and learn more about it from the internet, have a decent discussion with your ENT, pediatrician, audiologists, school authorities etc. By establishing MAM in 2019, the Microtia and Atresia community in Malaysia now has a place to call their own. We may not be able to deal or solve all of their problems, but we can guide them in the right direction. We can talk to each other, finding solutions to raised concerns, sharing experiences that could allow parents to formulate and apply ways to further enhance their own children’s upbringing and lifestyle. It is also a place to celebrate differences. It is about empowering the MAM community.
As the Founder, it has been a nerve wrecking-struggling-exhausting uphill climb. Without financial backing, full-time manpower, it’s more often than not, feels like a small row boat trying to go deep sea fishing. Moreover, with the post-pandemic COVID-19 hitting my family rather hard (like others), we too needed time to prioritize, create what works as we try to adapt and adjust to the new norm. It is frustrating when our initiatives for awareness programs or requests for sponsorships or donations are met with sarcastic remarks and slamming doors. Apparently, being “Nak kata pekak, tak pekak. Nak kata tak pekak, pekak.” was not a cause for concern. It was not considered ‘serious enough’ or a ‘major concern’ as it is not a total hearing loss, especially for the unilateral conditions. I wonder if the last 24 years dealing with locality, speech issues, brain fatigue etc .. were not important enough to find ways to ease. What about those born with added medical situations – craniofacial issues, inability to eat or breathe to say the least? No matter how frustrated I may be, babies with M&A are born, regardless of what the global financial situations are, and I cannot ignore and leave them hanging when they seek my help. I still answer each and every one of them; only because I remembered how I felt 25 years ago when Aqil was born at a time when inflation hit the country as it did us, badly, too. As long as I am able to comfort panic mothers, I will do so. Small steps. So when faced with question such as “Until when will you be doing this?” Well I guess, “I will stop, when I stop”.
My husband and I were born with two perfectly hearing ears, so no matter what we do or say, we can never claim to know how our son and his community feels. As MAM spokesperson, it is Aqil who needs to give voice to the community. We can’t fight his battles but we can prepare him for his journey ahead. And that is why we do what we do with hope that we would be able to pay it forward and make life a little better for parents like us, with children like ours. It is our small contribution to mankind in the name of the Almighty Allah. Let’s celebrate differences. Our children are meant for greatness. May 2023 be a new gateway. Insyallah. Semoga Allah SWT permudahkan, memberkati dan melancarkan urusan berkaitan dengan Pertubuhan Microtia Atresia Malaysia. Amiin.
Much love and respect, Sue Yusoff (MAM Founder)
Pertubuhan Microtia Atresia Malaysia
“Pertubuhan Microtia Atresia Malaysia (MAM) registered on February 15, 2019 stands as a platform where knowledge, life experiences and general information related to Microtia and Atresia, are shared within the Malaysian community i) born with Microtia and Atresia, ii) and parents/guardians of children born with Microtia and Atresia. Prior to this (2017), MAM ran as a support group called Microtia Atresia Support Group_Malaysia (MASG_Mal) that uses social media platforms and chat groups to reach out and create awareness. This support system aims to empower these individuals as they approach and/or deal with different phases (stages) of life. As every single Microtia case is different (although the MA grade may be the same), these parents/guardians and those born with these deformities must be continuously empowered with latest updated information so as to assist them in creating a better and meaningful life experience. Nonetheless, we neither provide any medical related / professional advice nor do we specifically recommend any form of treatment options and/or BAHA brands. We continuously remind our MAM members and audience that they need to approach their own medical team prior to deciding what is best for themselves or their children. On the other hand, MAM works closely with 3rd. parties (frontliners within the medical/health and academic industry) and publish relevant information as references, referrals and/or guidance that work both ways amongst the service providers, Malaysian public, M&A community and those born with Microtia and Atresia, nationwide.”
2. We aim to increase Microtia and Atresia awareness within the Malaysian society (nationwide).
3. We aim to reduce the effects of isolation resulting from insecurities and threats received from the surroundings.
4. We aim to work with MAM members and relevant 3rd parties to positively challenge unfairness.
2. Effective language and communication helps Microtia and Atresia individuals’ social, emotional and intellectual development.
3. When having to make choices, Microtia and Atresia individuals are mostly influenced by families with clear, balanced information.
4. Microtia and Atresia individuals should be involved and participate in decisions which affect them. 5. Microtia and Atresia individuals should be valued by society and have the same opportunities as any other disabled or able-bodied individuals.
The Logo (Ribbon)