Brayden has the most severe form of Spinal Muscular Atrophy, Type 1 (SMA). This is the biggest genetic killer in Australian children under two years of age. 1 in 35 Australians carry the defective gene for SMA.
As a result of his condition, his muscles will continue to deteriorate, eventually resulting in his death.
Children with this form of SMA have an outer life expectancy of two years of age. 80% of children with his condition don’t live to see their first birthday but he is such a fighter, and HE MADE IT. There is no cure for SMA and while there are trials in America presently there are no such trials available for Brayden.
As a result of Brayden’s muscle deterioration he is no longer able to swallow effectively which means he chokes constantly on his secretions. He has never been able to lift his head or move his legs (only slight movement in his fingers, forearms and toes) but now he is deprived of the joy of being able to lie on his back or be sat up in his chair (with specialised supports) as the choking has become so constant and severe.
Our only hope is that our sweet, happy boy has some joy in his life before he passes.
We have managed thus far by providing him with CONSTANT one on one attention which as you can imagine is very challenging, especially considering the fact that Brayden has three older sisters. He is now well and truly sick of lying on his side, watching ABC kids and having me sing him nursery rhymes.
We are hoping to get him an iPad to play games on and watch videos. He has played on his physios iPad in the past (moving his fingers to pop virtual bubbles and touching the screen to make sounds) and it brought tears to my eyes watching his face light up with joy. He literally spends his entire life lying on his side, therefore this type of interaction would provide much needed stimulation as he is a bright, alert, and intelligent thirteen month old trapped inside a body that cannot move.
If this is something you feel you could assist us with we would be forever grateful as it would literally be life changing.
Sincere thanks for taking the time to read this
- annonymous annonymous
- Matt, Sam, Kassie and, William
- Phill, Blair and, Stella
- Amy belleville
- Karen Ashdown
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