Sister, Sister!
Makenzie and Macey are 9 years old and will be going into third grade this year. Although, Makenzie wants you to know that she is older by about 30 minutes!
They have two siblings, an older sister who is 11 and loves to play with them, and a younger brother who they described as “a 4-year-old who talks a lot.” Haha!
Makenzie and Macey adore being twins, and there wasn’t a moment where they weren’t giggling and smiling at each other during this interview. Their soft voices and little grins were so contagious that it was impossible to not smile and giggle with them the entire time.
For twins, these two have navigated a lot of life in their nine years. And they have done so with a lot of love and grace for each other. When they were born, Makenzie had to spend 24 hours in the NICU as she couldn’t keep her body temperature up. Makenzie was very fatigued and as time went on, she was not reaching developmental milestones like Macey.
At 14 months old, Makenzie was seen by a geneticist at Children’s Hospital and Medical Center in Omaha and was diagnosed with a rare genetic condition called mucopolysaccharide disorder type I (MPS1), also known as Hurler syndrome. She lacks a lysosomal enzyme needed to break down sugar molecules, and as a result, builds these proteins that are toxic and attack her internal organs. Though not curable, MPS1 is treatable with weekly IV enzyme replacement therapy, and a bone marrow transplant. If left untreated, Makenzie was given less than five years to survive.
At 17 months old, Makenzie and her family packed up their belongings and moved into the Ronald McDonald House for 15 months while she underwent two bone marrow transplants as her first transplant failed and required a second one to be done. Due to having two bone marrow transplants, Makenzie continues to deal with some ongoing complications with her lungs, immune system, and adrenal glands. She continues to have a lot of medical appointments, including IV infusions to boost her immune system, and does weekly physical, occupational, and speech therapies.
Though Makenzie’s medical journey has been difficult, she and Macey are involved in many typical 9-year-old activities. Macey enjoys being involved in a lot of school sports, such as softball, soccer, and volleyball, and the activities don’t stop there. Both Makenzie and Macey love to dance, and they take tap and ballet classes at William Henry School of the Arts in Seward. Their faces lit up when they talked about their teacher, Ms. Peyton Davis-Schmit, and they both said tap class was their favorite! It made sense to us after learning they are working on cool steps like the Buffalo and Double Time Step.
4-H is an after-school activity the twins are involved in, and every summer, they love to make projects and show cows at the Seward County Fair. They have been showing bucket and stocker feeder calves for two years! Their older sister, Angela, shows the big market steers and heifers.
This summer, Makenzie, Macey, and their mom, Ann, spent a week at the Ronald McDonald House in Minneapolis, MN. We asked them what it was like to stay at the Ronald McDonald House, and they said, “You get to do fun, camp-like activities.” They even went on a few field trips! One time, Cabela’s came to visit and taught them all about fish. They even brought fishing rods and plastic fish to teach them how to catch fish! How fun is that?
During their stay, Makenzie had a few doctors’ appointments at The University of Minnesota Masonic Children’s Hospital. She said her favorite doctors there are Dr. Lund, Dr. Miller, and Dr. Walker! Between her appointments, the Ronald McDonald House, shopping at the Mall of America, paddle boating, sail boating, and riding on a six-person bike, the three of them kept busy during their trip.
We are very glad that Makenzie and Macey had a fun trip and it sounds like they can’t wait to start school this fall!
