Kaitlyn & Shannon Anlezark's Story
The worst thing a parent can hear is a doctor saying "There is something very 'seriously' wrong with your child!"
That is what we heard last year in May 2008. Our daughter Kaitlyn was diagnosed with a serious illness called Spinal Muscular Atrophy (SMA).
SMA is a degenerative motor neuron condition. It is a complex condition affecting individuals across the lifespna, for which, to date, there is no known cure.
It's a rare, inherited condition that results in loss of nerves in the spinal cord and weakness of muscles. Children with SMA get weaker over time and eventually end up in a wheelchair.
Our story continues to get sadder. When Kaitlyn was diagnosed with SMA, we were 8 months pregnant with our third child who was due a month later in June 2008.
We were then told that it is a genetic condition and our next child had a one in four chance of inheriting the same condition.
SMA is inherited when the parents each have a faulty gene and the baby inherits two faulty copies of this gene from each parent. We had no idea we carried this gene as our first born Chantele is fine. Up until this point, we didn't know that were was anything seriously wrong with Kaitlyn.
She had seen various doctors and had various tests but nothing was diagnosed at this point. We were in shock with the information we were told. We tought there is no way this could happen.
Then in November 2008, we couldn't believe we were being told, 'your son Shannon has the same condition.'
Life changed overnight for our family. Suddenly we were faced with having two children with a very serious illness which could be life threatening.
We have to do various things to help our children, such as purchasing another car and having it modified so we can take the children out in their wheelchairs to be able to attend pre-school/school and just to be able to get out and enjoy themselves. We also need to make modifications to our hom.e
I hope this gives you an insight about what Spinal Muscular Atrophy is and abour our lives and what will be ahead of us.
Thank you for reading our story.
Kaylene and Greg Anlezark