Michael Casten avatar

by Michael Casten |

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SMA and frustration

Kevin Casten Five Servings of Strength

“I’m sorry you have SMA,” Lindsay said to Ella.

“Me too,” I echoed.

Ella’s head moved to the side a bit as she looked at us and said, “I know.”

Ella is becoming increasingly frustrated with having SMA. She has two unaffected siblings who are just about her age and they are running, jumping, and playing all the time. Yes, Ella joins them when she can and does an amazing job keeping up with them, but it seems like it’s the small things that are bothering her the most.

If her water is just out of reach, she has to ask for help. If she drops a Lego piece or a toy, she has to ask for help. If she wants to color, she has to ask for help. All day long over the summer months she watches how Ava and Henry do things for themselves, and she watches them get better at doing things for themselves. All the while, she struggles every day with the simplest of tasks.

Ella recently had a second physical therapy evaluation to see if there has been motor function improvement since beginning treatment with Spinraza. She gained 4 points on the Hammersmith test, which is clinically significant! She demonstrated an increase in large motor skills such as the ability to sit on her hands and knees unassisted as well as roll over (she can now roll several times in either direction).

We’re hoping that this news will inspire her to look forward to her injections more readily than she has in the past, and we’re hoping that her strength increases so that some of the areas where she struggles each day might be alleviated.

Maybe someday she’ll be able to take on and off the caps of markers. Maybe someday she’ll be able to reach for her water and have the strength not only to grab it but to pull it to herself. Maybe someday she’ll have the strength to lift the brush over her head and comb through her beautiful hair repeatedly. Maybe someday she’ll have the strength to wash herself as she sits in a warm tub of sudsy water. Maybe someday she’ll have the strength to snap Legos together consistently.

Maybe someday …


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.


Charles Sutte avatar

Charles Sutte

Ella this is for you!!! Yes, you will be able to run and jump in the near future. With Spinraza and new medications in the pipeline you will be get much stronger. I'm a 70 year old body builder with type 4 SMA in my lower legs. Maybe, after you get your treatment I might get treatment. I'll race you!!! Charles Sutter


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