My Life with SMA
Last updated: August 2021
It all started here
Mom was wondering why a bubbly little girl who can already speak at 10 months old cannot crawl but managed to sit. She skipped a few baby step milestones. A worried mom brought her daughter to the hospital. We went for a few follow-ups at different hospitals. Went to the shaman to find a ‘cure’ but nothing changed.
That is where life started to twist.
A diagnosis of SMA type 2
I was diagnosed with spinal muscular atrophy (SMA) type 2 through a biopsy. At that particular time, my parents were clueless. They had never heard of SMA. It happened 23 years ago when Mr. Google didn't exist yet. There wasn’t really much readily information regarding SMA.
My parents were told there was no treatment and no cure. The only thing they could do was provide love and care to their baby girl.
SMA is a rare neuromuscular disease. Most doctors do not know SMA well. If the medical experts don't know much about it, what about us?
Two years later, my sister was born. She had more or less the same milestones as me. Doctors at that time assumed that she was also an SMA patient.
Wanting to learn more about my condition
Once I was done with high school, I started to become more curious. Curious to know more about my disease. People had been asking me “what is SMA?”...
Actually, I had been asking myself the same question for years! I could barely answer that question because I myself didn’t even know much about the disease I have. I knew that I had been diagnosed with spinal muscular atrophy (SMA), but I didn’t really understand what it was. I didn’t know how to answer people.
My parents had not explained it to me in detail. One thing for sure was that I knew they were always worried if my sister or I caught a fever, the flu, or started to cough. That’s definitely not a good sign for us.
Needing to use a wheelchair
I remembered I could only stand on my own for a few seconds before I fell down. I used to walk but with a very slow movement and basically needed help from other people. When I was 10, I started using a wheelchair part-time.
My progressive disease developed from that age, as now I can no longer stand for long. As life went along, I became more aware of my condition. I was in a wheelchair full-time by the age of 12. I could no longer step or even stand.
Due to my curiosity, I started to research our disease. Through my reading, I understand more about SMA.
Staying positive with SMA
Nevertheless, I never feel weird about not being able to walk. I was lucky because I was surrounded by kind-hearted people. Having parents who are always there with me through thick and thin and a bunch of friends who I can always count on makes me stay positive all the time.
I never questioned why I can’t walk. My sister didn't either. We never asked that question to our parents. What we always do is just enjoy our life being pushed in the wheelchair.
Hey, you know there are a lot of benefits of being in a wheelchair? One of them is we can get discounted prices for theme park tickets. Isn't that cool?
I know God has a better plan for me. As the saying goes “without the rain there would be no rainbow”.
I’ve gone through a lot. But no matter what happens in the future, I will try my best to stay positive as much as I can.
Do you have experience with managing depression & SMA?
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