How would you describe your child to someone who hasn't met him or her?
Joe is 8 years old and in second grade. He is the sweetest guy! He has an engineering-type brain — he wants to know how stuff works, and he questions and processes constantly. At the same time, he can be a goofball! Joe also loves to read. He’ll read anything from Ninja Turtles books to books about Abraham Lincoln.
How did your family come to find out about Gillette?
The summer before Joe started kindergarten, we began to notice he couldn’t keep up with other kids. I remember being at a waterpark and watching him climb a set of circular stairs. All the kids were passing him and my girlfriend asked, “Do you think he’s declining at all?” Later that summer, on a trip to Mall of America, he fell seven times. We saw his pediatrician the day before a 10-day family vacation to Boston. She asked him to climb the stairs without using the handrail. He told her, “I can’t — I will fall.” They did a blood test and said they would be back in touch in about a week. When the phone rang the very next day, I knew something was wrong. They told us they suspected muscle disease, and even mentioned muscular dystrophy, and told me “our expertise ends here.” They called Gillette Children’s Specialty Healthcare and, due to the urgency, we were able to get an appointment right after we got home from our vacation. It was the longest 10-day vacation ever, but we were blessed to be with family.
We had to wait six weeks for blood and genetic testing to confirm Joe’s diagnosis. It was the longest six weeks of my life. Finally, it was confirmed that Joe has Becker muscular dystrophy. Being newly diagnosed is an agonizing time period. That’s why, today, I’m a contact at the Muscular Dystrophy Association (MDA) so I can help provide newly diagnosed families with emotional support.
What treatments and services has your child received at Gillette?
Joe sees Dr. Stephen Smith for neurology and Dr. Mark Gormley for physician medicine and rehabilitation. He wears ankle-foot orthoses at night and he’s done some physical therapy to work on mobility at Gillette, too. During one of our first visits at Gillette, we were connected with representatives from the MDA so that we could take advantage of their services and resources, such as a loaner stroller for Joe, and most recently, a scooter.
What has your experience at Gillette been like for your child and family?
Everyone—from Dr. Smith, to Dr. Gormley to Joe’s neuromuscular nurse, Kristin Morgan, is really great. We especially love Kristin. I think it’s wonderful we know she will be Joe’s nurse at every appointment. Kristin will call us 3 to 4 weeks before Joe’s next appointment just to see how he’s doing and if we have concerns so she can have answers ready at our next visit. We like all the familiar faces. Gillette knows our family and knows Joe. When Joe has an appointment near his birthday, they remember it and give him a gift. It’s a comfortable place for kids and we feel welcomed at Gillette.
What about your child makes you most proud?
Joe knows his own limitations, but he never complains. He just rolls with it. Joe has some tough days, but he is a really positive kid who takes it all in stride. He’s doing good—as best as he can be doing.