My son's nine bittersweet years of growing up with Spinal Muscular Atrophy

By Edmund, Spinal Muscular Atrophy, Malaysia, February 10, 2020

Branden with his brother Jaden

It’s been almost eight years since Branden, my second son was diagnosed with Spinal Muscular Atrophy (Type 1 C), a rare neurodegenerative disease. Sitting here late at night typing this letter, I cannot help but sob and my tears fall as reliving the day stirs up raw and traumatising emotions. It is difficult for me.

There are no words anyone could have said to make me feel better then, and nothing anyone could do to have made me feel better about his future. I was told that there was no cure, no treatment, and life would be an uphill battle. And to be prepared to lose him within a year or two.

Yet one year after another, he has been blessed to be able to celebrate his birthday, and today he turns nine. Every birthday has been a great gift.

The truth is, it is also bittersweet.

The bitter:

I strive to keep positive but I get pulled down by SMA. I am distressed by the hardships Branden is forced to endure due to this rare disease. He is not able to attend regular school and only has few friends to celebrate with on his birthday. SMA prevents him from experiencing many of the fun and care-free games that kids of his age should enjoy at parties. I stress over where he can celebrate. I worried about the accessibility of places and constantly on guard every time we are out.

Recently, he was unwell and it led to pneumonia. It’s always hard to watch him struggle to breathe and exhaust himself from coughing. It traumatises both of us to have to suction the phlegm from his throat. He begs and cries out: “Daddy no! Daddy, please don’t!”. It must hurt, and he gags uncontrollably on the catheter. But I have to do it otherwise worsening pneumonia can take his life. He knows that too and doesn’t fight the catheter every time I poke it down his throat.

Life can get so exhausting, to constantly research therapies, interventions, medical and assistive products. And then struggle to find or afford it, especially when some treatments cost more than my car. Sometimes I wake up in the middle of the night worrying about his future and all the uncertainties if something were to happen to me, or his mummy. It is distressing that the living, medical and social support in our country is not dependable.

I get uncomfortable with having to keep asking people for help. I even get hurt by some people who dislike the way we have to strive and fight for our rights and our lives.

I am conflicted – so happy to see so many patients with SMA from so many countries getting new drug therapies that completely change their lives by stopping and stabilising this dreaded disease - yet I get intensely frustrated with why and how it’s so unbelievably hard to get these therapies here. Spinraza, Zolgensma, and soon Risdiplam are revolutionary drug therapies that aren’t cheap but certainly not as expensive as the prices quoted in the USA. Malaysia does not lack the ability or resources to provide these life-saving and life-changing treatments. But the way things work (or don’t) for kids like Branden, forces them to suffer deteriorating health and face an early death. They are buried under a system that could and should be more equitable and fairer.

Despite all this, I am amazed how Branden can radiate cheerfulness and positivity on everyone who meets him. I wonder, how does he make every day filled with such happiness?

The sweet:

We are continually overwhelmed by the countless number of family, friends, and perfect strangers who pick us up when we fall. To cheer and encourage us when we need it most. Branden is fortunate he gets to experience so much love and kindness in life. And I am so proud that at a young age he has always been able to share this with others through his cheekiness and friendliness and put a smile on anyone’s face.

Today, we know so many unbelievable parents and wonderful children, and we support each other unconditionally and can lean on each other in bad times and cheer each other to get through hurdles.

“Best day ever!” He reminds me to always have gratitude and be thankful and to look on the bright side of life, and make every day, every moment, super special.

I try to see the world through his eyes and not at his disabilities or disease. He shows me that despite our daily struggles, it does not stop us from getting excited over the small things that can bring meaning and happiness. His “brother-time” on the iPad, funny farts and funny faces, enjoying his coconut juice and Hokkien mee, and Friday movie night at home.

He wakes up asking “so what’s the plan today?” filled with enthusiasm, and he greets every day and every challenge with the sweetest of smiles and twinkling eyes. He gives me strength and resilience in a way that I cannot explain, and I cannot give up.

Together with his brother Jaden, they are the reasons why I dare to write this letter today as emotionally difficult as it is. To watch my sons having to go through difficulties that no kid should have changed me because it can completely break me down. And yet, these experiences build me up again into someone I didn’t think I could become.

“I’m tired but I never give up.”

To everyone who’s reading this, please don’t let anyone give up on Branden and other Malaysians with SMA. Being affected by SMA is not ideal. I know Branden is scared. I am also afraid that he might not have the physical strength to make it through as SMA keeps robbing him and lay waste to his muscles. Sometimes knowing he has the inner strength to get through anything is what we need. He thrives and everyone is blessed to know him.

And the bitter-sweet:

When mummy asked Branden what he wanted for a present, he told her it’s not what he wants to get but what he wants us to take away – to take away SMA. There is still no cure for SMA. No number of hugs and kisses can help. However, with new drug therapies, just imagine! We can stabilise and strengthen the incredible life he leads today! And stop having to constantly fight against the loss of function that will eventually rob him of his ability to move, eat and even breathe.

I’m trying as hard as I can to give Branden the best possible life although I am neither rich enough nor powerful enough to get him the present he asked for. I am just one father. The SMA community is small. We accept that we depend on the kindness of politicians, doctors, all of you - to believe in a future for Branden and his friends.

I will have to disappoint Branden this birthday, and it hurts us both and leaves us scarred. These scars will also represent what tried to beat us but failed. Together, we journey on in life with hard times and lots of emotional ups and downs but still with hope, and every day we appreciate each other’s smiles, giggles, kisses and cuddles.

Some time ago after a trip, he asked “Mummy can I help you to unpack?”

“It’s OK Branden. You can play by yourself and mummy can unpack the luggage.”

“Mummy, why does God give me SMA? I can’t walk and jump or help you.”

Mummy is speechless.

Jaden (Branden’s brother) says “Branden, at least you can talk. And you are very cute!”

“Oh. OK!!” And he was back to his happy self again.

Thank you kids. Growing up with you and SMA have given me new perspectives on life and what is important.

Happy birthday Branden. Let’s enjoy it.

Love always,

Edmund, your daddy.

For those who are reading, this is a public service alert.

About 640,000 Malaysians are carriers of the gene that causes Spinal Muscular Atrophy or SMA, and this number is growing.

At least one baby is born with SMA every two weeks.

 

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