A Malaysian In Florida Series

News / Update

I didn't know how to start off this series so let's start from the beginning. After having a battery of tests done, the doctor finally breaks the news. Your child/family member has Spinal Muscular Atrophy.

"Huh? What's that? Never heard of this before".

"But this "never heard of before" disease will change your child's and the life of your family forever. So you sit there while the doctor explains to you what the disease is. You sit there, not fully understanding what he or she is saying but you just continue nodding your head because you are in shock. You vaguely hear words like not be able to walk, feeding tube and the worse one of all....most die before age 2 (for Type 1)

You go home (or sit in the hospital if your child is warded) thinking all hope is lost. You are in shock. Then comes the sadness, the despair. You stare at your child thinking there's not much that can be done because the doctors have told you that.

Take some time to grieve. Take some time to let it sink in. But you have to wake up from the fog. You have to SNAP OUT of it!

Because you need to research and read up on the disease. YOU need to take responsibility of the situation. Yes, doctors know a lot, but they do not know everything. I'm a doctor, I know. I have encountered patients who know far more about their particular disease than doctors do. Why? Because you will only read up on 1 particular disease and be up to date on the latest research, whereas a doctor has to read up on hundreds of different things. Be the expert of your disease. Be your child's advocate.

Google will be your best friend. But separate the real information from people trying to take advantage on desperate parents.

A good starting point is the Cure SMA website www.curesma.org. Here you can find booklets on breathing, physiotherapy, nutrition and a whole lot more. There are even links to latest research programs and which ones are recruiting participants (I will talk about this in a later entry).

Another good website is www.smasupportuk.org.uk which has a lot of practical advise. It even suggests toys to buy that will help your kids. Then there are inspirational websites which do a lot of charity and information awareness for SMA such as the Gwendolyn Strong Foundation and WeCareJourney.

YouTube is another place to check out. There you can see other SMA children and what their parents have done for them. Good channels to watch are Bill Strong's channel who's SMA angel is Gwendolyn Strong who had type 1 and lived till the age of 8 and was and still is the inspiration for the Gwendolyn Strong Foundation. Brad Fisher also has a channel which shows all the treatments he dies for his Type 1 daughter including cough assist, physiotherapy and their day to day life. The Goodentree channel shows little Nora and how much fun she has despite her Type 1 diagnosis.

Facebook is also a great place to join SMA groups both locally and internationally to get knowledge from parents and caregivers who gone through similar situations.

You can also contact other SMA families who can give you advice, support or just be a sounding board for you to vent you frustrations. They know what you are going through .

There are so many things you can do for your child. Get knowledgeable and most important, NEVER GIVE UP!

By Dr Sharmina Kamal

We are happy to share more and can be contacted by email at growingupwithbranden@gmail.com or at our Facebook group called “Branden Lim – Growing Up With Spinal Muscular Atrophy (SMA)”.