March 20, 2014 my life changed forever
My daughter, Sofia Maxine Scott, died from the disease Spinal Muscular Atrophy (SMA) Type 1. She was 2 years, 8 months old. This disease is genetic, with no known cure. Her mother gave up everything to stay by her side when she first took ill, and I gave everything I could to her after my shifts at a factory. She loved Mickey Mouse, Team Umizoomi, and The Bubble Guppies. She loved her mommy, daddy, and big sister.
This disease is chronic, progressive, and fatal. There is no cure. No matter how much research there is, it wasn't enough.
I can't make sense of this at all. The disease is genetic, and the doctors had prepared us for her early death since she was diagnosed at 5 months of age. Yet, there is just something so wrong about having to bury your toddler.
I hate SMA. I hate death. I hate life. I hate myself for being a daddy who couldn't fix her.
Fuck this planet.
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It's difficult enough when our loved ones pass away, but when you are a parent and the child is as young as your daughter it is truly devastating and unfair. My prayers tonight will include Sofia and for researchers to find a cure for SMA.
You did everything you could and you and your family made her life the best if could be. I'm sure she appreciated that.
'Sorry' is not a strong enough word, but it's all I have to offer. (((hotrod0808)))
Your life is not over, take the time to mourn and then all the good memories of her, will help you through this.
I cannot imagine your awful pain.
i feel your pain and sense of helplessness
