Emma Shaw is a mum on a mission. Like most of us, she adores her kids, but unlike most of us, she has six of them. And that is not where the differences end. For Emma not only has to rise and shine each morning to get six kids organised for the day, but she does so on her own (her husband works in the mines for a month on followed by a week’s leave), bestowing extra care and attention on two of her children who are a little more of a challenge than most.
Meet Arlen, six, who was diagnosed more than a year ago with Asperger’s Syndrome, and Frankee-Lee, three, who has one of the rarest hearing impairments in Australia. And it is the latter ailment Emma has had to fight tooth and nail to get taken seriously by the authorities, when she already has so much on her plate.
Born with Aural Atresia (with only 10 to 12 kids diagnosed with the condition yearly in Australia), Frankee-Lee appeared at first to be a very ‘normal’ little baby … until the first hearing test.
“Frankee-Lee failed her first hearing test in the hospital before we left and I was told that this wasn’t that unusual. I did think it was strange, however, as none of my previous five children had had this experience. She continued to have another couple of tests and failed these too, and by six weeks she had failed four tests in all.
“I was advised she had glue ear and that it would resolve itself in time. Again, I thought this was unusual, but the medics were being so flippant I had no choice but to accept what they were telling me. By five months of age, however, I noticed that Frankee-Lee was lip reading. She wasn’t looking at my eyes when I spoke to her, like normal babies do, she was looking at my mouth. This was when I became very concerned and knew there was something wrong.”
Following her gut instinct, Emma rang Tasmania Health (where they were based) and asked for advice on what she should do. Sadly, Emma was reprimanded for being an “overbearing mother” and told, once again, that the diagnosis had been glue ear and she was to accept that.
“I suddenly realised I was in a bleak situation where my little girl was sick and no-one was listening. The medics just kept repeating that it was glue ear and refused to do any further testing or to refer Frankee-Lee, so I knew there was only one way out. We had to leave Tasmania for the mainland to gain access to proper services. It was then that we decided to move to Noosa.”
Uprooting the whole family, Emma and her husband relocated to the Sunshine Coast, and after several consultations with doctors and specialists, Frankee-Lee’s condition was finally confirmed.
“There had been difficulties with the diagnosis as usually Aural Atresia only affects one ear, plus Microtia (where the outer ear looks different) and Goldenhar (a facial deformity) often accompany the condition, making it easier to diagnose. Frankee-Lee was booked in for surgery with an ENT specialist to rectify what they thought was grommets for the glue ear and it was only when they commenced the operation that her condition was discovered.”
Devastatingly, Emma was told there was nothing that could be done.
“It was such a sad moment,” says Emma. “We had thought she would be coming around from her operation able to hear, so to suddenly have this snatched away was very hard to deal with. We felt lost. Our hearts broken. We had also just found out several months earlier that Arlen had Asperger’s Syndrome, so it felt like the world was against us.”
And so began Emma’s frantic research into her daughter’s condition, and with each paper she read and website she came across the fight inside her grew.
“After talking to Simone Cheadle from the Brisbane Hear and Say Centre, I discovered that Australia is very behind in understanding Aural Atresia, but in the USA the condition is much more widely known about. One day, as I scoured the internet, my breath suddenly caught in the back of my throat, my heart slowed to the thudding pace of a drum and the world spun around the words I had found. A cure.”
Emma discovered that Aural Atresia could be remedied by a very serious operation in America, and in that moment the universe seemed like a brighter place.
“It was then that I saw the cost, however. A prohibitive cost which we could never afford. But I knew I had to make it happen and I started to fundraise.
“Everyone was so supportive. I held a charity auction and raised $13,000, plus I received donations from the Tewantin Noosa RSL ($5,000) and Frangipani Dreams ($5,000), while STO Law donated the whole proceeds of their annual charity bike ride to Frankee-Lee (a whopping $36,000). Finally, I had the money Frankee-Lee needed to have one ear fixed.”
Last year, Frankee-Lee attended the Californian Ear Institute and underwent the almighty operation, at the tender age of 36 months, remedying her hearing in one ear.
“It took her a long time to get over it, but when she finally had the last of her bandages removed and I whispered in her ear, the look on her face as she spun around towards me, having heard my voice, was worth every moment.”
And now as Emma campaigns to raise money to get to America to have Frankee-Lee’s left ear fixed also, she thanks her lucky stars that her youngest daughter can hear. And what is more, Tasmania Health has changed its policy on the basis of Emma’s mission, so that now children with a hearing loss are followed up after nine to 12 months, instead of being ignored by the system. A huge result in anyone’s book.
‘I am grateful to everyone on this journey who have made a little girl’s dream come true,” smiles Emma. “She will always be indebted to you.”
To make a donation for Frankee-Lee’s second ear operation, please visit www.frankeelee.wix.com/frankee-lee