Albinism and a mother’s vision – Amy’s story

Our little angel, Neva, was diagnosed with Albinism at just three months of age.  Albinism is a rare genetic condition which affects one in 17,000 babies born each year worldwide. It affects both the skin (little or no melanin) and eyesight. This means a lifetime of sun protection (not so difficult with our Australian sun smart culture!)  But it also means a lifetime of vision impairment—many people with Albinism are legally blind. All have difficulty with depth perception and resolution.

When Neva commenced primary school this year, a visiting teacher was appointed to ensure such things as the written word are legible to Neva. She isn’t always able to make out things like written activity sheets, story books and pictures, even if she is seated at the front of the class. She will need specialist training to learn how to cross a road alone when she is older and she will never drive a car.

The day I sat and listened to the Vision Australia childhood specialist outline all of the roadblocks my gorgeous little newborn will come up against, was heart breaking. At that time, as a mother, I felt truly helpless as I went through the stages of grief, then anger and finally coming to accept that I had to say goodbye to the idea of Neva ever being a “normal” child.

So what is a mother to do? Well, sometimes in the black, quiet of night, when tears fall and fears are faced, a small light is ignited in a mother’s heart.  Questions prevail… “is this really my child’s destiny?”, “how can I help her overcome the obstacles that have been placed in her path?” Sometimes, if you just listen carefully enough, an answer is received, and the world shifts…..

Our society is recreated by the choices some mothers make along the way.  There’s a new brand of business people creating magic everywhere.  They are known as “Mumpreneurs”.  These are mothers crafting a new reality for themselves and their families by exploring more flexible career choices, and conceiving new business ideas.

Mums with children who have special needs are a very unique brand of Mumpreneur. In an attempt to create a better path for their own little ones, they not only create a new career for themselves but also alter the future for not only all children in the world with those particular special set of needs.

Sometimes when a mother is called to rise to the challenge, she creates doors where before, there were only walls. She will use her intuition to navigate around obstacles and seek new opportunities for her child to advance. I refused to settle when the paediatric ophthalmologists advised they couldn’t do much for Neva’s eyesight. “She will just learn to use what she has”.  I went home and researched other options, including vision therapy, and found an optometrist who specialised in prescribed prism lens glasses – an alternative to the standard lenses available. These could ultimately improve her vision. It was a chance to offer Neva a brighter future but, when the glasses arrived Neva wouldn’t wear them. I had to find a solution. I searched tirelessly for options. A glasses strap was the best solution but those currently on the market were unattractive, conspicuous and so badly fitting that none did the job. So, I set about creating my own eyewear strap. One that really held specs in place, looked fabulous and withstood the demands of daily toddler life. The straps worked so well, I decided to take them to market. The “Speccles” strap, which now has a global following, will
help children (and soon adults) everywhere to keep their eye wear securely and fashionably in place.

When a mother’s vision becomes a new world vision, it is breathtaking. Motivation through need is a powerful force, and sometimes provides enough inspiration to encourage us to think outside the box and provide a solution to improve our children’s future.

This is how the world moves forward and how all of our lives are enhanced in the long run.