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Family Perspectives: Henry’s Wisdom
In this column, SMA News Today writer and parent, Michael Casten, shares his son Henry’s views on family and his sister’s SMA:
“Henry’s the middle child and is 9 years old, surrounded on both sides by his sisters. He fits the role perfectly, negotiating when they disagree. Henry has a keen sense of fair play and will vocalize when things are awry. He’ll play with the girls on their terms yet can quickly switch his energies to playing with school friends. He has abundant energy. He houses an emotional life, experimenting with how to express all of his emotions on any given day. He’s quick on his feet and talented in musical affairs. He takes on the challenge of being a big and little brother to two girls seriously, and there’s none better than him for the role.
What is SMA?
“Henry took on a serious tone after taking a bite of his Baker’s Choice doughnut saying, ‘It’s a disease that causes kids to not be able to walk. Types 1 and 2 can’t walk but I think Type 3′s can. Basically, it’s a disease kids have when they are born. It makes you weaker and weaker and could kill you. I don’t think Ella will die from it because she gets Spinraza. I wish she were a Type 3.'”
Read more here: “Family Perspectives: Henry’s Wisdom“
Can you relate to Michael’s story? Share your own experiences below.
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