A year since we knew

It's been about a year since we knew about Kaelyn's underlying condition of Spinal Muscular Atrophy (SMA). When we knew about the full extent of what the disorder would do to Kaelyn, it seems like the world crumbled down. We never felt so  lost and helpless. If I break a leg, I know I can put a cast over the leg, rest and the bones would heal and my muscles would build up strength if i exercise it.

What is this Spinal Muscular Atrophy

I have been visiting the hospitals quite regularly these few weeks. I always hear mummy and daddy talking about Spinal Muscular Atrophy with the doctors and therapists.

Just what is that? Daddy copy and pasted something from wikipedia for me

Spinal muscular atrophy (SMA) is an incurable autosomal recessive disease caused by a genetic defect in the SMN1 gene which codes SMN, a protein necessary for survival of motor neurons, and resulting in death of neuronal cells in the anterior horn of spinal cord and subsequent system-wide muscle wasting (atrophy).

This SMN seems like food for the motor neurons. Without food, they will die and hence will not control the muscles. Like me, I go weak and hungry without milk.

So this is why I am unable to lift my head and legs. I also belong to the Type I category. 

hello everybody

Hello everyone, my name is Kaelyn. I was born in the February of 2012. Mummy said I  was always kicking around and doing drops and somersaults in her tummy before I popped out of her tummy. 

Daddy said that I was a really angry baby when I popped into this world. I was screaming and crying when he first set eyes on me.

Me? Angry and screaming? I am such a sweet baby. How could I do that. Oh well...maybe when I am hungry or warm perhaps.

Me jumping, doing somersaults and kicking in mummy's tummy? I can't really move myself right now.