Luke Barriger - Sanford, MI
"I feel like there's a whole organization behind us, all very knowledgeable, personable. I feel they want what's best for Luke and for our family." Carrie Barriger
After Pausing for Infusion Treatment, He Gets Back to Being a Kid
Luke Barriger is busy being an active second grader. At the same time, with his family's support, and regular visits from his MyMichigan Home Care nurse, he's well-adjusted to living with the effects of a rare, inherited muscle condition called Pompe Disease.
Luke lives in Midland with his parents and three older siblings. The whole family is very active in their small community. "Luke plays baseball, basketball and he loves to swim," said his mom, Carrie Barriger. "He's a very happy and outgoing kid who doesn't shy away from a challenge."
"Pompe Disease is considered a form of muscular dystrophy," Carrie explained. "Thankfully, scientists were able to develop a treatment for it, which became commercially available the year before Luke was born," she said. "He started enzyme replacement therapy after being diagnosed at 22 months of age."
He now receives this infusion treatment every other week.
"We went to Cleveland Clinic for Luke's diagnosis, and then to Sparrow Children's Hospital in Lansing for the first year," Carrie said. "His Pompe specialist wanted him in a hospital setting in case he had initial reactions to the treatments."
When the routine was settled, the Barrigers looked for a way to allow Luke to have treatments at home.
"We found a private company, but didn't feel they offered the connections we could have through MyMichigan Home Care," Carrie said. "The whole organization is great. They were very capable and willing to make the switch to home happen for us."
After working with MyMichigan for five years now, she likes the security of knowing that, if they ever have to run to the hospital, Luke's background is instantly available to MyMichigan doctors and staff.
"With MyMichigan, I feel like there's a whole organization behind us – our nurse, pharmacist, billing staff – all very knowledgeable, personable and well-coordinated. I feel they want what’s best for Luke and for our family."
Carrie said Luke absolutely loves his MyMichigan Home Care nurse. "We are very, very thankful for her," she said. "She loves Luke and is like part of our family. I can't imagine having anyone else. She's professional, detail-oriented and always has Luke's best interest at heart."
Luke's nurse even supported his participation in a clinical trial. "She had to learn a very strict protocol," Carrie said. "The whole organization had to do a lot of work. They were determined to not have his care interrupted during this complicated process."
The Barriger family has helped raise awareness of Pompe Disease in their community, having raised funds for gene therapy research.
They also love to celebrate Luke's accomplishments. "When he learned to walk at age 3, we had a big party with 300 friends and family members," Carrie said. "We had inflatables, a little train ride and Elmo even made a visit."
She said Luke is an 8-year-old with an old soul. "He has lots of friends. He's helpful, friendly and mature beyond his years. He has been through a lot yet most kids don't even know there's anything wrong. When he's absent from school, his classmates just say he's at home getting his muscle juice."
Carrie says that Luke knows his muscles don't work like other kids' but he doesn't view himself as incapable. "Fishing is going to be his sport, we think, and we're going to try golf, too. We are encouraging him to find something he's passionate about."
MyMichigan Home Care offers an in-home assessment to evaluate individuals' needs and recommend services that may help them accomplish their goals. Those who would like to schedule an in-home assessment may call (989) 839-1773. Those who would like more information on available services may visit www.mymichigan.org/homecare.