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.
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.
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.
Eevery 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.
Share your story with us so others can find the hope and help within your experience.
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