In June McFarland’s first 24 hours of life, she was taken via jet by the Children’s Mercy Transport team to Children’s Mercy Kansas City from a hospital in Wichita, Kan. “We didn’t know she wasn’t well until she was born,” her mother, Megan, said. “Not having a diagnosis, you kind of feel helpless. It always makes you question. You want to know what happened.”
June was born in 2015 with several health challenges, including a congenital diaphragmatic hernia, pulmonary hypertension, a heart arrhythmia and other complications.
During June’s 52-day stay in the Children’s Mercy NICU, a nurse came into the room and asked her parents, Megan and Kevin, if they’d like to participate in a study which would allow them to have June’s DNA sequenced at no cost to the family. They agreed. At the time, the genetic testing was inconclusive.
Until October 2019, the McFarlands were busy caring for June, raising their three daughters and running a farm, when Megan received an unexpected phone call. Through Genomic Answers for Kids, a new flagship program of the Children’s Mercy Research Institute (CMRI), researchers were able to diagnose June with a myelin regulatory factor gene (MYRF)-related disorder in just three months, which explained her health challenges.
“We were very happy to hear that there is a name for it. It’s rare, but there are other kids [who have it]. Without research and Genomic Answers for Kids, we wouldn’t have the answers and diagnosis we now have,” Megan said.
Today, June enjoys spending time outside among animals on her family’s farm and playing with her sisters.
“To finally have an answer gives us a sense of relief and direction and the knowledge that we need to help June, and that she will have throughout her life,” Megan said.
Together, our love will find answers for waiting children and families — and give hope for more treatments and cures.