Last updated: October 2021
It broke my heart when one of my good friends' daughters was diagnosed with SMA. The diagnosis was tentative, as he was waiting for a genetic result.
The emotional toll of an SMA diagnosis
But I know it’s been a rough couple of days. Emotionally, getting the diagnosis was extremely hard.
He used to help me a lot during school time. To suddenly be hit with something like this without warning is difficult.
SMA has been a part of me and my life for as long as I can remember. To know that his daughter has the same diagnosis as me is just hard.
I was shocked. What? Is it true? What a small world.
Supporting a friend through his child's diagnosis
I empathize and support him how I can. My mom also spoke to him. We introduced him to our support group so that he knows they’re not alone.
Later on, he was lucky enough as his daughter was treated. His daughter was referred to a neurologist and was quickly given the treatment.
The first few months since his daughter started on the treatment have been a journey marked by small wins. She has been able to tilt around and push through her legs.
A huge milestone for them. To see her improvement makes me beyond happy.
Fighting for treatment options in my country
Having a treatment is not something easy to get in my country. We are still fighting for the treatment for all types of SMA in Malaysia.
For now, it was given under the beneficiary program and only applicable to SMA type 1 under the age of 17.
As I write this, I feel happy that his daughter was able to get the treatment. It might not be a cure yet but at least it slows down the process.
Getting to where they are now has been a learning process for all of us. We kept on telling him he is not alone in this journey.
Support from others in the SMA community
He can reach out to other families in the SMA community for support. There will be challenges and tears, but there will be celebrations and laughter too.
Even though I was diagnosed 23 years ago, I am still learning about SMA. At times, it can feel like my diagnosis has control over my life, occupying my mind at every waking moment.
The pain, frustration, and anxiety can leave me feeling like I am fighting a losing battle.
Having SMA means fairly constant pain or discomfort. Some people may have it worse than me, some less.
Holding onto hope for the future
But I believe that every day is a new learning experience as I juggle life with SMA.
I know the journey can be long, but there is hope. I hope that one day before I close my eyes, I will get the opportunity to get the same treatment as everyone else.
Full of hope,
Have you found yourself facing accessibility challenges lately?
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