Cheyenne McNeilly is battling Glanzmann Thrombasthenia
Glanzmann Thrombasthenia is a rare disorder that causes Cheyenne’s body to bleed constantly.
CLEVELAND COUNTY, N.C. (WBTV) - You never, ever know what anyone else might be facing.
Please meet Cheyenne McNeilly, a rising seventh-grader at Burns Middle School in Cleveland County. She was born in 2010 in Shelby with a cone-shaped head and some bruising.
Her mom, Melody Turner, says medical staff assumed that was caused by the birth canal. Typical assumption.
But at 2 weeks old, Cheyenne began having nosebleeds. More unexplained bruises also began appearing across her body.
“I made numerous trips to the doctor with no explanation for the symptoms,” Melody said. “In return we, her parents, were turned into DSS for suspected child abuse. My daughter was placed in care with her grandmother. She continued to have the unexplained nosebleeds and terrible bruising and was then taken away from her grandmother, and placed into foster care for two months as a newborn.”
Melody says despite being with DSS, Cheyenne continued to have bruising/nosebleeds.
A local pediatrician—Dr. Laurie Horsley with the Shelby Children’s Clinic—suggested Cheyenne could have a rare disorder known as “Glanzmann Thrombasthenia.”
“I owe this pediatrician so much,” Melody said. “Without her, I don’t know what we would’ve done. She did lots of research to help get Cheyenne out of DSS custody, by getting the official true diagnosis of Glanzmann Thrombasthenia.”
“If you research GT—that’s the nickname for this rare blood clotting disorder—you find it’s actually ‘one in a million’ to be diagnosed and that those who have it don’t produce the platelets needed to stop bleeding,” she continued. “So once Cheyenne begins a nosebleed, it’s almost impossible to get it to stop, and she’ll bruise without any known injury.”
As you can imagine, Melody says this has caused struggles for her daughter throughout life.
Their family—Melody, Cheyenne, an older sister, Autumn Turner (17), and a younger brother, Cody McNeilly (11)—has been living with Cheyenne’s ups and downs.
“All the kids have seen her fight through this firsthand,” Melody said. “Cheyenne’s father and I aren’t married and are no longer together, but his name is Eric McNeilly, but he often takes the kids and is awesome with them. He adores Cheyenne and she has him wrapped around her finger. I have a boyfriend named Clint Chapmen, and he also helps. We’ve been together three years. We all work together as a family to do whatever needs to be done whenever Cheyenne’s GT flares up.”
Like, right now.
Cheyenne is now 12-years old. Around the age most girls hit puberty.
In mid-July, Cheyenne was hospitalized at Novant Health Hemby Children’s Hospital in Charlotte because in her body, bleeding doesn’t stop.
As this is written today, August 12, she is still there.
“Doctors tell me that Cheyenne is the worst case they’ve ever dealt with,” Melody said. “To be fair, this disorder is rare and they aren’t entirely familiar with it, but they are trying to help in various ways. While in the hospital, she has received blood transfusions, platelets, and numerous rounds of OBGYN medications/hormone replacement therapy, despite being in middle school. Yet, no relief.”
“She is hospitalized now indefinitely as she continues to bleed despite having being given over 35 units of blood. Her hemoglobin will sometimes be 9, she’ll get two transfusions, then the next morning it’ll be around 6.0. She just continually loses more blood than is ever being replaced.”
Melody’s niece, Danielle Howell—a big advocate in trying to find a cure and make others aware—also added that Cheyenne has had an operation where a balloon was placed to try and minimize the bleeding.
“It partly worked,” Danielle said. “But again, it’s no cure for this diagnosis and what Cheyenne is living with. She just continues to lose blood that her body needs to stay alive.”
This is a difficult and personal story. Anyone reading it doesn’t need me to say that—it’s obvious. But Melody said she wants you to know about her daughter in part to educate us all, because it’s real, and because though they’re in our community, no one really understands what they’re facing.
“Glanzmann Thrombasthenia is too rare to talk about,” Melody said. “The general public doesn’t know this blood disorder exists. It baffles pediatric hematologists. There is no cure in sight. This is why giving blood is so important… and something I advocate for endlessly. At this time, blood transfusions are the only thing keeping Cheyenne alive and I want people to know what’s happening.”
Melody ended her note with this one sentence: “I hope this disease gets the cure my baby deserves.”
Please welcome this child into #MollysKids with love.
You never know what others are facing, but at least we can educate each other and share stories in an effort to create more understanding.
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