Michael is married and a father of three, one being a child with SMA Type II (born in June, 2011). He is an educator who has worked directly with children and their families since 1994. He loves his family, writing, working with his hands, and taking road trips. Michael holds a bachelor’s in psychology (1994) and a master’s in education (2001).
The Castens are a family of five: Mom (Lindsay), Dad (Michael), and three kids (Ava, Henry, and Ella). Ava is 13, Henry is 11, and Ella is 10. We have two dogs and a bunny. I am a full-time elementary school teacher and have been working…
Ella just finished fourth grade and will be entering her last year at elementary school in the fall. She loved fourth grade and learned so much. She’s a bit nervous for fifth grade, but she’s up to the challenge. Ella has been at the same…
Ella loves the outdoors. As summer begins in our area, the warm weather follows, with shorts and short-sleeved shirts the preferred attire. But spinal muscular atrophy (SMA) presents some challenges for Ella as she plays outdoors. One challenge is getting herself outside. She has two options.
Ella had a special day last Wednesday. On June 10, she celebrated her 10th birthday. Ella turned double digits on her golden birthday. Naturally, she was excited for the day, but had no idea what was in store. I got her out of…
Technology is a big part of our lives these days. It helps us with learning, shopping, and communicating, among other facets. Kids today rely on technology for many of their needs. But what about kids with spinal muscular atrophy (SMA)? How do they fare in this…
Ella has always loved to sing. Because she can’t join physical activities or play an instrument, we decided to enroll her in the Young Naperville Singers (YNS) choir. Ella was overjoyed. She finally had something like her brother and sister — who study piano and…
My alarm went off at 7:09 a.m. I rolled out of bed and walked into Ella’s room. She lay sleeping peacefully. I went downstairs and met both dogs, who were ready to go out for the morning. I made a cup of coffee and sat outside with the…
Ella looks forward to her Spinraza (nusinersen) treatments for SMA. She knows that Spinraza helps her get stronger. And while she doesn’t like the smell of the anesthesia, she toughs it out anyway. This round of Spinraza is a bit different though. Since the onset…
Ella has not been out of the house for weeks. She spends much of her time doing schoolwork. Every morning, her teacher has a class meeting on Zoom. Ella tunes in to get the day’s lesson. When the meeting is over, she immediately gets…
Ella is a social person. She loves developing relationships with others and is always up for a family night. She builds delicate yet sturdy friendships with people and navigates these relationships well beyond her years. Having SMA presents challenges. For many years, Ella watched her siblings…
