Reese is the 15-year-old sister of an individual with Limb-Girdle muscular dystrophy. Reese has developed a number of ways to support his brother, and in the interview, she shares and discusses them. Reese also discusses how her understanding of her brother's condition has evolved with age, along with her concerns for her brother's future.
Background: My name is Reese Barber, and I’m 15 years old, and my brother Max is 17. Max has Limb-Girdle muscular dystrophy, which is a weakness in his shoulder, hips, and thigh muscles, and his muscles deteriorate over time. And he started off being kind of weaker as a child, and after repetitive bone breaks, his bone would grow back, but his muscles got weaker. And he’s been in a wheelchair since he was about 7 or 8.
How is he doing today?
He's definitely doing a lot better. I think that when he was younger, it was harder for him to find things that he loved to do. But over time, he's found things that he can enjoy, such as playing video games, which has definitely made him happier because he's found things that he truly loves to do because he can’t do sports or any physical activity.
What was your understanding of his condition when you were younger?
When I was younger, I was so confused because I'd see other kids playing tag or tackling each other and racing each other back and forth in the pool. And I would wonder why my brother couldn't do this. And I think at the time, I was blaming my brother, thinking he's not like the other siblings. And I didn't realize he wanted to do it just as much. I don’t know if my parents ever really explained his condition to me, but I think over time, it was something that I understood.
Do you explain your brother’s condition to your friends?
I didn’t explain Max’s condition in middle school and elementary school because we all kind of like grew up together, and everyone knew that he was my sibling. And then, when I went to high school, I went to a private school, so people were from all around, and nobody was really in the same district as me. And so nobody really knew that he was my brother or his condition. When people ask, I don't really tell them because I hate the sympathy that they gave me. So I kind of just said that I have a brother, and then the second that they would ask who, of course, I would tell them and explain his condition. But it's not really something that I explain right away.
What is your relationship like with Max?
Max and I are really close. We play video games and board games because they still have that competitive factor that you kind of want with your sibling. When we were younger, we would play I Spy with my little eye and 20 questions. And now we send each other TikToks all of the time. feel like it's a way for us to bond. And, of course, we just like to talk too. I feel like you don't always have to do specific activities, so sometimes we just sit down and talk.
Do you worry about Max’s future?
Yes, definitely. Especially recently because he is going to college soon. And I think about how he going to find his friend group, and if he is going to be able to have the college experience without feeling left out or like, he's not able to do anything. Beyond college, I think it's gonna be really hard for him to find a partner who will truly understand what he's going through and who will help him through it.
What advice would you give to someone who is looking to support their sibling with disabilities?
I would say to always be open to talking about what they are going through and how they are feeling. And just giving them unconditional love and encouraging them to speak their mind.