Branden Lim, 4, is the second son of the writers Edmund Lim and Yap Sook Yee. – Pic courtesy of Edmund Lim, December 15, 2014.This is the story of a handsome little boy with a twinkle in his eye and a smile that brightens up the room.

Spinal Muscular Atrophy (SMA) causes Branden very severe and profound disabilities, and a wide range of complex health issues. He faces difficult challenges, but his attitude makes growing up with Branden and SMA meaningful, inspiring and happy.

Branden came into this world quietly four-and-a-half years ago. His cry was silent, and he was immediately rushed to the neonatal intensive care unit to treat pneumonia and fluid in his lungs.

He recovered after a week, but the joy of having him home was soon tested by constant worries over his general weakness (hypotonia) and delay in development milestones. His “relaxed” nature persisted for months, until his weight stalled.

Upon celebrating Branden’s first birthday, we decided to have him undergo a genetic test.

As parents, we shared the excitement of his elder brother Jaden. To be able to together run and play, make friends, go to school and learn, discover the world! These hopes were shattered that day the genetic test confirmed that Branden had SMA, from mummy and daddy who are genetic carriers of this disease.

Based on his clinical symptoms, with neither treatment nor cure available, the hopes we had got crushed after being told that it’s a hurdle to just get him to his next birthday.

We don’t think there are words that can fully describe the indescribable trauma, devastating pain, shock, anguish, and sorrow. To lose the path in life you had cherished, and face, instead, a deep dark empty hole.

And we were lost and staggered around this emptiness, into which our tears fell as we cried and cried and cried. Why him? Why us? We are at fault? What’s going to happen?! How will Jaden take this?

Thinking back, what followed in the first month is a blur. Before we had time to steady ourselves, it got worse! Jaden got chicken pox and then hand foot mouth disease (HFMD), we separated the boys (we didn’t know what else to do). Mummy with Branden over at his aunt’s home, daddy with Jaden remained at our home.

Branden unfortunately got HFMD anyway, which caused his vital signs to plummet and he ended up in hospital.

Funny enough, the separations were the catalyst we needed. It makes you feel real loss. But then every new day dawns, and the light shows that what you felt was a real loss, is only from distance.

We are all here today, let’s look forward to tomorrow. So instead of looking down into that abyss, we can look up. And by looking up, we see things. And here’s what we open our eyes to:

We accept what we can’t change, that SMA is here to stay with Branden and our family. It starts with acceptance.

There’s so much Branden cannot do, plus the many health complications and risks. He likes to ask “why” to so many things, and will keep asking until he’s happy he understands. Then once he does, he moves forward.

After the first month of finding out about Branden’s SMA, we wrote to all our family and friends to share on what’s going on with our life, and how we felt, and we have not looked back since.

We won’t give up. Branden’s not shy to ask for help, to say please, to always thank you. So like him, we focus on what we can do, not what we can’t. There is so much to be done, but its one step at a time, as they say Rome wasn’t built in one day, but we need to start and accompany Branden on this journey. He always bounces back quickly from any setback, and is such a fighter, giving up is not an option.

We learn to go with the flow when there are changes to the plan. After Branden was hospitalised the second time for pneumonia, he had a naso-gastric (NG) feeding tube to improve his calorie intake. (Eating for SMA kids is tiring due to muscle weakness, and swallowing has heightened risk of choking and “silent aspiration” where food drops into the lungs leading to pneumonia which is the leading cause of mortality in SMA.)

Sometime later, once he gained enough strength to do so, he pulled it out. Although there are increased risks to monitor closely with every meal, he is much happier without the NG tube, and started vocalising and speaking (the NG tube was obstructing and making it uncomfortable before).

So as much as we like to believe we know what’s best, sometimes we need to step back and let Branden show us the way.

We smile every day. Branden has a wonderful attitude and strong spirit, shining through his eyes and sweet smiles. Even when he is ill, and hospitalised, or enduring the countless visits and tests with the neurologists, nurses, nutritionists, orthopedic surgeons, pulmonary specialists, physical therapists, occupational therapists, hydro therapists, and more who care for him. He smiles often and readily shares it, and we do the same.

We live our life as normal. Yes, any travel is very limited. Even shopping malls are best avoided.

Before going to a restaurant we need to check accessibility, seating and environment. We are still not sure how he can attend kindergarten and school. All activities need proper planning.

But Branden doesn’t complain or gripe about these limitations. (If he makes a fuss, it’s often over toys with his brother Jaden!) And Jaden is equally wonderful as our son and brother, who has a beaming smile and laughs heartily.

As they can’t walk together, Jaden loves to push his “tee tee” around in his wheelchair. And if he’s not, he walks beside Branden as we push the wheelchair, both brothers’ holding hands. That’s part of their life, different to others, but normal (and special!) to us.

We feel we are blessed. That’s not to say we don’t get frustrated and demoralised, angry and upset, tired worrying about health risks, and the huge and increasing financial strain.

SMA being a congenital disease means that all health insurance policies for Branden are declined. Various equipment needed to keep him healthy and provide him mobility are very expensive, including likely future surgical interventions. And if potential SMA treatment drugs going through the US Food and Drug Administration Drug Approval Process are successful, it’s reasonable to expect a cost of RM1 million every year, for life.

Right now, we are happy to have celebrated Branden’s 4th birthday, and we hope there are many more to come. We are thankful to be blessed for Branden to reach more than twice as far than what we were told at the start.

And we also hope, and look forward, to how Branden can fit into school and society. To be supported to live a childhood just like other kids without disabilities. To be given stronger rights to live a healthy life, and to dream about and achieve his potential, in equal opportunity.

We believe he can contribute richly to society, like how he does today in our family.

Let’s not be shy about the challenges and constraints faced by children with disabilities, and to commit to driving change needed for a better brighter future for them. – December 15, 2014.

* Edmund Lim and Yap Sook Yee, who manage the Facebook group Branden Lim – Growing up with Spinal Muscular Atrophy (SMA), also write this on behalf of Malaysian Partnership for Children with Disabilities. The writers can be contacted at growingupwithbranden@gmail.com.

Branden Lim, 4, is the second son of the writers Edmund Lim and Yap Sook Yee. – Pic courtesy of Edmund Lim, December 15, 2014.This is the story of a handsome little boy with a twinkle in his eye and a smile that brightens up the room.

Spinal Muscular Atrophy (SMA) causes Branden very severe and profound disabilities, and a wide range of complex health issues. He faces difficult challenges, but his attitude makes growing up with Branden and SMA meaningful, inspiring and happy.

Branden came into this world quietly four-and-a-half years ago. His cry was silent, and he was immediately rushed to the neonatal intensive care unit to treat pneumonia and fluid in his lungs.

He recovered after a week, but the joy of having him home was soon tested by constant worries over his general weakness (hypotonia) and delay in development milestones. His “relaxed” nature persisted for months, until his weight stalled.

Upon celebrating Branden’s first birthday, we decided to have him undergo a genetic test.

As parents, we shared the excitement of his elder brother Jaden. To be able to together run and play, make friends, go to school and learn, discover the world! These hopes were shattered that day the genetic test confirmed that Branden had SMA, from mummy and daddy who are genetic carriers of this disease.

Based on his clinical symptoms, with neither treatment nor cure available, the hopes we had got crushed after being told that it’s a hurdle to just get him to his next birthday.

We don’t think there are words that can fully describe the indescribable trauma, devastating pain, shock, anguish, and sorrow. To lose the path in life you had cherished, and face, instead, a deep dark empty hole.

And we were lost and staggered around this emptiness, into which our tears fell as we cried and cried and cried. Why him? Why us? We are at fault? What’s going to happen?! How will Jaden take this?

Thinking back, what followed in the first month is a blur. Before we had time to steady ourselves, it got worse! Jaden got chicken pox and then hand foot mouth disease (HFMD), we separated the boys (we didn’t know what else to do). Mummy with Branden over at his aunt’s home, daddy with Jaden remained at our home.

Branden unfortunately got HFMD anyway, which caused his vital signs to plummet and he ended up in hospital.

Funny enough, the separations were the catalyst we needed. It makes you feel real loss. But then every new day dawns, and the light shows that what you felt was a real loss, is only from distance.

We are all here today, let’s look forward to tomorrow. So instead of looking down into that abyss, we can look up. And by looking up, we see things. And here’s what we open our eyes to:

We accept what we can’t change, that SMA is here to stay with Branden and our family. It starts with acceptance.

There’s so much Branden cannot do, plus the many health complications and risks. He likes to ask “why” to so many things, and will keep asking until he’s happy he understands. Then once he does, he moves forward.

After the first month of finding out about Branden’s SMA, we wrote to all our family and friends to share on what’s going on with our life, and how we felt, and we have not looked back since.

We won’t give up. Branden’s not shy to ask for help, to say please, to always thank you. So like him, we focus on what we can do, not what we can’t. There is so much to be done, but its one step at a time, as they say Rome wasn’t built in one day, but we need to start and accompany Branden on this journey. He always bounces back quickly from any setback, and is such a fighter, giving up is not an option.

We learn to go with the flow when there are changes to the plan. After Branden was hospitalised the second time for pneumonia, he had a naso-gastric (NG) feeding tube to improve his calorie intake. (Eating for SMA kids is tiring due to muscle weakness, and swallowing has heightened risk of choking and “silent aspiration” where food drops into the lungs leading to pneumonia which is the leading cause of mortality in SMA.)

Sometime later, once he gained enough strength to do so, he pulled it out. Although there are increased risks to monitor closely with every meal, he is much happier without the NG tube, and started vocalising and speaking (the NG tube was obstructing and making it uncomfortable before).

So as much as we like to believe we know what’s best, sometimes we need to step back and let Branden show us the way.

We smile every day. Branden has a wonderful attitude and strong spirit, shining through his eyes and sweet smiles. Even when he is ill, and hospitalised, or enduring the countless visits and tests with the neurologists, nurses, nutritionists, orthopedic surgeons, pulmonary specialists, physical therapists, occupational therapists, hydro therapists, and more who care for him. He smiles often and readily shares it, and we do the same.

We live our life as normal. Yes, any travel is very limited. Even shopping malls are best avoided.

Before going to a restaurant we need to check accessibility, seating and environment. We are still not sure how he can attend kindergarten and school. All activities need proper planning.

But Branden doesn’t complain or gripe about these limitations. (If he makes a fuss, it’s often over toys with his brother Jaden!) And Jaden is equally wonderful as our son and brother, who has a beaming smile and laughs heartily.

As they can’t walk together, Jaden loves to push his “tee tee” around in his wheelchair. And if he’s not, he walks beside Branden as we push the wheelchair, both brothers’ holding hands. That’s part of their life, different to others, but normal (and special!) to us.

We feel we are blessed. That’s not to say we don’t get frustrated and demoralised, angry and upset, tired worrying about health risks, and the huge and increasing financial strain.

SMA being a congenital disease means that all health insurance policies for Branden are declined. Various equipment needed to keep him healthy and provide him mobility are very expensive, including likely future surgical interventions. And if potential SMA treatment drugs going through the US Food and Drug Administration Drug Approval Process are successful, it’s reasonable to expect a cost of RM1 million every year, for life.

Right now, we are happy to have celebrated Branden’s 4th birthday, and we hope there are many more to come. We are thankful to be blessed for Branden to reach more than twice as far than what we were told at the start.

And we also hope, and look forward, to how Branden can fit into school and society. To be supported to live a childhood just like other kids without disabilities. To be given stronger rights to live a healthy life, and to dream about and achieve his potential, in equal opportunity.

We believe he can contribute richly to society, like how he does today in our family.

Let’s not be shy about the challenges and constraints faced by children with disabilities, and to commit to driving change needed for a better brighter future for them. – December 15, 2014.

* Edmund Lim and Yap Sook Yee, who manage the Facebook group Branden Lim – Growing up with Spinal Muscular Atrophy (SMA), also write this on behalf of Malaysian Partnership for Children with Disabilities. The writers can be contacted at growingupwithbranden@gmail.com.

Branden Lim, 4, is the second son of the writers Edmund Lim and Yap Sook Yee. – Pic courtesy of Edmund Lim, December 15, 2014.This is the story of a handsome little boy with a twinkle in his eye and a smile that brightens up the room.

Spinal Muscular Atrophy (SMA) causes Branden very severe and profound disabilities, and a wide range of complex health issues. He faces difficult challenges, but his attitude makes growing up with Branden and SMA meaningful, inspiring and happy.

Branden came into this world quietly four-and-a-half years ago. His cry was silent, and he was immediately rushed to the neonatal intensive care unit to treat pneumonia and fluid in his lungs.

He recovered after a week, but the joy of having him home was soon tested by constant worries over his general weakness (hypotonia) and delay in development milestones. His “relaxed” nature persisted for months, until his weight stalled.

Upon celebrating Branden’s first birthday, we decided to have him undergo a genetic test.

As parents, we shared the excitement of his elder brother Jaden. To be able to together run and play, make friends, go to school and learn, discover the world! These hopes were shattered that day the genetic test confirmed that Branden had SMA, from mummy and daddy who are genetic carriers of this disease.

Based on his clinical symptoms, with neither treatment nor cure available, the hopes we had got crushed after being told that it’s a hurdle to just get him to his next birthday.

We don’t think there are words that can fully describe the indescribable trauma, devastating pain, shock, anguish, and sorrow. To lose the path in life you had cherished, and face, instead, a deep dark empty hole.

And we were lost and staggered around this emptiness, into which our tears fell as we cried and cried and cried. Why him? Why us? We are at fault? What’s going to happen?! How will Jaden take this?

Thinking back, what followed in the first month is a blur. Before we had time to steady ourselves, it got worse! Jaden got chicken pox and then hand foot mouth disease (HFMD), we separated the boys (we didn’t know what else to do). Mummy with Branden over at his aunt’s home, daddy with Jaden remained at our home.

Branden unfortunately got HFMD anyway, which caused his vital signs to plummet and he ended up in hospital.

Funny enough, the separations were the catalyst we needed. It makes you feel real loss. But then every new day dawns, and the light shows that what you felt was a real loss, is only from distance.

We are all here today, let’s look forward to tomorrow. So instead of looking down into that abyss, we can look up. And by looking up, we see things. And here’s what we open our eyes to:

We accept what we can’t change, that SMA is here to stay with Branden and our family. It starts with acceptance.

There’s so much Branden cannot do, plus the many health complications and risks. He likes to ask “why” to so many things, and will keep asking until he’s happy he understands. Then once he does, he moves forward.

After the first month of finding out about Branden’s SMA, we wrote to all our family and friends to share on what’s going on with our life, and how we felt, and we have not looked back since.

We won’t give up. Branden’s not shy to ask for help, to say please, to always thank you. So like him, we focus on what we can do, not what we can’t. There is so much to be done, but its one step at a time, as they say Rome wasn’t built in one day, but we need to start and accompany Branden on this journey. He always bounces back quickly from any setback, and is such a fighter, giving up is not an option.

We learn to go with the flow when there are changes to the plan. After Branden was hospitalised the second time for pneumonia, he had a naso-gastric (NG) feeding tube to improve his calorie intake. (Eating for SMA kids is tiring due to muscle weakness, and swallowing has heightened risk of choking and “silent aspiration” where food drops into the lungs leading to pneumonia which is the leading cause of mortality in SMA.)

Sometime later, once he gained enough strength to do so, he pulled it out. Although there are increased risks to monitor closely with every meal, he is much happier without the NG tube, and started vocalising and speaking (the NG tube was obstructing and making it uncomfortable before).

So as much as we like to believe we know what’s best, sometimes we need to step back and let Branden show us the way.

We smile every day. Branden has a wonderful attitude and strong spirit, shining through his eyes and sweet smiles. Even when he is ill, and hospitalised, or enduring the countless visits and tests with the neurologists, nurses, nutritionists, orthopedic surgeons, pulmonary specialists, physical therapists, occupational therapists, hydro therapists, and more who care for him. He smiles often and readily shares it, and we do the same.

We live our life as normal. Yes, any travel is very limited. Even shopping malls are best avoided.

Before going to a restaurant we need to check accessibility, seating and environment. We are still not sure how he can attend kindergarten and school. All activities need proper planning.

But Branden doesn’t complain or gripe about these limitations. (If he makes a fuss, it’s often over toys with his brother Jaden!) And Jaden is equally wonderful as our son and brother, who has a beaming smile and laughs heartily.

As they can’t walk together, Jaden loves to push his “tee tee” around in his wheelchair. And if he’s not, he walks beside Branden as we push the wheelchair, both brothers’ holding hands. That’s part of their life, different to others, but normal (and special!) to us.

We feel we are blessed. That’s not to say we don’t get frustrated and demoralised, angry and upset, tired worrying about health risks, and the huge and increasing financial strain.

SMA being a congenital disease means that all health insurance policies for Branden are declined. Various equipment needed to keep him healthy and provide him mobility are very expensive, including likely future surgical interventions. And if potential SMA treatment drugs going through the US Food and Drug Administration Drug Approval Process are successful, it’s reasonable to expect a cost of RM1 million every year, for life.

Right now, we are happy to have celebrated Branden’s 4th birthday, and we hope there are many more to come. We are thankful to be blessed for Branden to reach more than twice as far than what we were told at the start.

And we also hope, and look forward, to how Branden can fit into school and society. To be supported to live a childhood just like other kids without disabilities. To be given stronger rights to live a healthy life, and to dream about and achieve his potential, in equal opportunity.

We believe he can contribute richly to society, like how he does today in our family.

Let’s not be shy about the challenges and constraints faced by children with disabilities, and to commit to driving change needed for a better brighter future for them. – December 15, 2014.

* Edmund Lim and Yap Sook Yee, who manage the Facebook group Branden Lim – Growing up with Spinal Muscular Atrophy (SMA), also write this on behalf of Malaysian Partnership for Children with Disabilities. The writers can be contacted at growingupwithbranden@gmail.com.