Kristi was diagnosed with limb-girdle muscular dystrophy in 1995 after showing symptoms two years prior. It wasn’t until about three years ago that she had full genetic subtype testing done, which showed she has type 2A.
“As a child getting a diagnosis, you don’t realize how bad it will get or what exactly is happening,” Kristi said. “The worry of not knowing is there, but with parents and family that come across strong and do whatever they can tends to lead you to hope.”
Living in Minden at the time, Kristi said she and her family played the doctor game for a long time, trying to find someone they liked that offered pediatric care. Eventually they found one, who also connected them with Muscular Dystrophy Association of Nebraska.
“MDA offers us a place to see all major appointments at one time, letting us see a neurologist, PT and OT all at one time. They have helped replace equipment on my wheelchair and offered a support group to attend, which is a way to connect with others who are fighting the same battle,” Kristi said. “Right now, MDA focuses a lot on research, which in the long run will be a blessing for everyone and generations to come. MDA also supplies a loan closet that allows us to borrow equipment we may need without having to hurry to purchase an item.”
Now 37, Kristi lives in Omaha with her mom and stepdad, her full-time caregivers. “They help me transfer, make meals, shower me and get me to places I need to be,” Kristi said. “Being wheelchair-bound gives me so many limitations, and muscular dystrophy takes away a lot of independence. You learn to rely on others.”
MDA is part of Kristi’s network of those she relies on. “MDA is like having extra family. They are there to support us and let us know we aren’t alone, giving us hope that our futures may be a little bit better,” Kristi said.