Summer is here and in full force. Ice cream trucks, sprinklers, and lazy days abound. Bike riding also tops off the season. Ella can now join in a way that she couldn’t do before! Through the generosity of the Jonathan Goers Bike Club and the coordination of…
Nutrition has always been a challenge for my daughter, Ella. And, in turn, it is a challenge for my wife and me. Due to Ella’s disease, she has an increased amount of difficulty digesting long-chain fats (meats, cheeses, etc.) and she also has a hard time…
Ella spends much of her day on the first floor. She races around from the living room, through the kitchen or front hallway, and into the family room, or vice versa. Sometimes the dogs chase her, or she chases them. Often, Ava and Henry join in…
Several years ago, an organization known as “Special Spaces” contacted us because someone nominated us for their service. The organization performs a complete bedroom makeover for kids with cancer, heart conditions, tumors, and other illnesses. Ella was nominated and chosen for a bedroom makeover.
An envelope covered in hearts and addressed to “Mom and Dad.” This envelope was kept secret for days, but there were hints that it was coming. Ella worked on its contents for days, making the perfect gift for her parents. She covered her project…
Editor’s note: Columnist Michael Casten caps his “Family Perspectives” series exploring how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. Three generations of family. Six people, all affected by SMA, brought me to their thoughts. I sat…
Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series exploring how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. What is SMA? “It’s a disease that makes it so I can’t walk. As I get older I lose…
Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series exploring how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. Henry’s the middle child and is 9 years old, surrounded on both sides by his sisters. He fits the…
Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series in which he explores how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. A smart little girl of 10, Ava gravitates to her friends more often now…
Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series in which he explores how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. Lindsay, Ella’s mom and my wife, is a vibrant woman whose beauty is surpassed…
