If you’ve never heard of Spinal Muscular Atrophy, the sad fact is that sooner or later you will. SMA is the leading genetic killer of infants under the age of two. A cure is tantalisingly close – and here’s our chance to help.
I, like many Australians, had never heard of Spinal Muscular Atrophy – until it claimed the little girls of two of my friends. Two amazing mothers who had to watch their beautiful, longed-for daughters slowly deteriorate and die. One of these mothers has now become a crusader for SMA research. Lee Mackay is an inspiration, and I’m sure Babyologists will agree when they read her story.
Lee and her husband Jase already had one daughter, Kyla, when they were blessed with a second girl, Taylin (that’s her at the top of the post). Life seemed perfect, until Taylin became ill when she was just ten weeks old. After what seemed like the onset of a simple case of bronchiolitis, came weeks of hospital trips, and watching their daughter become weak and struggle to breathe.
When she was finally diagnosed with SMA, Taylin had lost her ability to suck and swallow. She died at just four-and-a-half months old. For Lee and Jase, their heartbreak was only intensified when they had to tell Kyla that her beloved sister was gone.
Spinal Muscular Atrophy is a genetic disease which causes progressive deterioration of motor neurons in the spinal cord. It results in the weakness and wasting of the voluntary muscles. One in thirty-five people are carriers of the gene, and Lee and Jase are both carriers. However, they’ve since gone on to have two gorgeous, healthy boys.
Lee now raises funds tirelessly on behalf of Spinal Muscular Atrophy Association of Australia, as SMA receives no government funding. Last year she organised A Million Steps for SMA – In Memory of Taylin Mackay, and raised an incredible $24,000. The charity event will be held again this October.
Babyology is dedicated to giving back. In August last year we donated $1200 to HeartKids Australia and last September we auctioned off a Bugaboo Donkey, donating the proceeds to the Global Fund’s vital work in Africa to stem mother-to-child transmission of AIDS. Then in December 2011 we gave $1800 to The Smith Family. Most recently in March we donated $2000 to the Kosmatos family to help their four-year-old son Harris attend a program at the Cerebral Palsy Education Centre.
The SMA Association of Australia is currently funding SMA-specific research through a group in Western Australia, and this is where the Babyology community can help by simply sharing this post with your Facebook friends, your real-life friends and everyone you know. Ask them to like Babyology’s Facebook page, and for every new like on Facebook in September, we’ll give twenty cents to the SMA Association of Australia. It’s a small way we can all get involved in helping find a cure for SMA.