A Perspective from an SMA Father

Third in a series. Read parts one and two.

In the following interview, I’ll explore how SMA impacts the way people perceive me, as well as share valuable advice for families with a loved one newly diagnosed with SMA.

I interview my friend, Jakeb Klein, whose son has SMA. Jakeb has intimate knowledge about the disease.

RB: If you could only give me one piece of advice about life, ignoring that I have SMA, what would you tell me?

JK: I would tell someone to never stop experiencing things and having fun. The world is a place with so much to do and see. Enjoy it even when you may not feel you have time or when you feel broke! Before you know it, the opportunities and time will only decrease.

Would you tell me something different if you took SMA into consideration?

The fact that I have a child with SMA opens my eyes so much more to the exclusion by society of those with disabilities. Knowing what I know now, I would probably say something like my first response. However, prior to my experiences with SMA, I likely would have said something very different and probably offensive in some unknowing way.

Interested in SMA research? Check out our forums and join the conversation!

What counsel would you give a family with a new diagnosis of SMA?

The toughest part of this diagnosis for us was coming to terms with and accepting this reality for our son. You can’t really put a timeline on “being OK” with it, and you’ll likely always struggle to find peace. However, when you do reach that point, reach out to others in the SMA community and beyond. Talk to caseworkers at hospitals about all the amazing programs available and to other families about how to do things. It changed our lives. There are so many amazing families doing so many amazing things with and for their children. It opened our eyes to all of the possibilities that exist for these amazing children, and we owe it to them to give them the very best lives we can.

What would you say is the most important thing someone with SMA can do to improve their physical health?

For our son, we feel like finding a suitable nutrition plan — SMA standards of care — in combination with certain medications really turned our son’s health around after a long struggle with handling his food volume. Also, ensuring they are getting services from varying types of therapy is great for them.

If you could only give me one piece of advice for good mental health, ignoring SMA, what would you tell me?

It’s much different for men and women when thinking about mental health. As a man, I find that the best way for me to maintain good mental health is to be alone; to spend time with just myself, away from distractions, and to really be introspective. For my wife, she finds that talking and opening up to those closest to her really helps her to get things off her mind. Everyone has their own way of keeping themselves in a good place mentally. The most important thing is to be honest and true to yourself and to do what you feel is best for you.

Would you tell me something different if you took SMA into consideration?

Again, we don’t really view those with disabilities the way most people do. We feel our son and those like him are just as capable as anyone else. Their journey will just be different. For someone with SMA, we would likely offer that same advice. To be true to yourself and to know what you want for yourself.

***

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.