Courtney Miles, a program manager at Children’s Wisconsin, says that anyone looking at her family of four would think they’ve led perfectly normal lives, but both of her sons, Leo and Bo, have had their share of major health struggles.
Leo was born with a rare genetic disorder called Noonan syndrome, which can create a host of problems across growth and development, though Courtney says his diagnosis came very late for most kids with Noonan syndrome. “We really didn’t start having concerns until he was around three and had a speech delay,” she says.
Because people with Noonan syndrome often have bleeding disorders, more testing followed Leo’s diagnosis. Leo did indeed have a bleeding disorder, specifically Von Willebrand disease, which makes it difficult for blood to clot. “Dr. Veronica Flood at Children’s Wisconsin and Versiti’s Comprehensive Center for Bleeding Disorders (CCBD) became Leo’s hematologist, and we absolutely adore her,” Courtney says.
Courtney says that although she and her husband, Jason, felt equipped to handle the other challenges that came with Noonan syndrome, Von Willebrand disease made them nervous. “Leo bruises easily. He can’t take ibuprofen or aspirin without supervision, and he can’t play contact sports,” she explains. “As Leo has gotten older, his clotting has become more difficult to manage, but we have an arsenal of techniques thanks to Dr. Flood and the CCBD team.”
That support has included consultations before surgeries and dental work;, letters and other education materials to Leo’s school so that teachers know what to do in case of an accident; and providing Leo and his family with what to look for and how to avoid bleeds.
“Dr. Flood and her team have had a huge impact on preparing Leo to more independently manage Von Willebrand’s now that he’s sixteen,” Courtney says. “And it’s allowed me to feel comfortable allowing him to go off and do the things we would like him to do without the worry and fear.”
But in August of 2016, about a month after Leo was finished with OT and PT services and his family felt like they had found their footing, another life-changing diagnosis arrived, only this time it was for Leo’s brother, Bo, who had just celebrated his third birthday.
Bo’s treatment for B-cell Acute Lymphoblastic Leukemia (B-ALL) lasted 39 months or just over three years, and he took to treatment well until the last six months when his body suddenly became dependent on blood transfusions. He needed a transfusion every two to three weeks. Courtney says, “As parents, you learn the signs but after a while, Bo could tell us when he needed a transfusion. He’d wake up and say, ‘I think I need new blood today, Mom.’”
No one knew why Bo’s body had stopped making red blood cells. “We worked with multiple hematologists, ran every test imaginable,” says Courtney. Eventually, Bo’s blood count dropped so low that they had to temporarily pause treatment, but the break allowed his body to reset, and he was able to finish treatment without further transfusions. Today, at 12 years old, Bo is cancer-free and living an active, healthy life.
“Leo and Bo are complete opposites of each other in personality,” Courtney says. “Leo is so sweet and gentle. He’s not competitive at all. Bo, on the other hand, is so determined and loves to compete. We often say that God knew exactly what he was doing when he gave each of them their challenges.”
When Courtney looks back at Bo’s cancer treatment, she thinks about how important it was to have blood transfusions available when Bo needed them most. “It was really at the end of treatment when things should have been easier and more normal, that we found ourselves in some of the scariest moments. We relied heavily on blood from strangers to give my child the energy he needed, the ability to go play baseball, and to simply be a kid.”
She adds, “It’s this strange dichotomy: you’re in a really awful situation, and then you find yourself overwhelmed with gratitude for the people who selflessly donate and make those moments possible.”
Versiti is home to world-renowned blood health innovators.
Versiti Blood Research Institute and Medical Sciences Institute are located on the Milwaukee Regional Medical Center campus in Wauwatosa, Wisc. Their 40 investigators are internationally known blood health innovators whose work spans basic, translational and clinical research in a variety of areas, including: sickle cell disease, hemophilia, cellular therapy and many more.