Mazy Gilleylen of Overland is looking forward to her 12th birthday in September. But she’s dreading what comes next.
Approaching puberty is alarming for transgender kids like Mazy. To them, the changes can feel like like a betrayal of who they really are. Doctors can prescribe puberty-blocking drugs to prevent unwanted prevent breast growth or a deepening voice. But the cost is out of reach for many families.
Mazy’s parents are struggling to pay for what they consider a lifesaving measure.
"We have no time to wait because she's going into middle school and we definitely have puberty knocking at our door," her mother, Amber Gilleylen, said.
‘My heart tells me I’m a girl’
Mazy's birth certificate says "male." But ever since she could talk, she’s expressed the truth of her identity.
“My heart tells me I’m a girl; I’m just a girl,” Mazy said.
When she was 8, her family began calling her Mazy and embracing her pink clothes and barrettes. She has friends who only know her as a girl with long hair and turquoise fingernails. But Mazy worries about how puberty will change her.
“First you start growing hair on your whole body. Then … your voice starts changing,” she said.
Thinking about these changes is very disturbing for her.
“It feels like I’m a man,” Mazy said.
The class of drugs that can prevent those changes is called gonadotropin releasing hormone agonists. Many people know them as “puberty blockers.” Basically, they keep the body from releasing estrogen and testosterone.
In 2014, the American Academy of Pediatrics found that children who are guided by medical and mental health professionals through gender-affirming measures, including puberty blockers, become well-functioning adults.
“Adolescents who are transgender who have not been allowed to socially transition or physically transition have very high rates of anxiety, depression, suicidality," said Abby Hollander, a pediatric endocrinologist at St. Louis Children’s Hospital. "That make the treatment and the risk-benefit ratio weigh heavy on the benefit side.”
Risks include the small possibility of an elevated red blood cell count and soreness at the injection site.
The blockers are like a pause button, buying time for transgender children. If a patient stops taking them, puberty begins. Many transgender kids stay on the treatment until they’re around 17, and then begin hormone replacement therapy, with estrogen or testosterone.
Pediatric endocrinologists at Children’s Hospital follow between 150 to 200 transgender kids. Late last month, the hospital and Washington University opened a Transgender Center of Excellence. Holland expects the launch will draw many more young patients.
“In other cities — Chicago, Boston, Los Angeles — when they developed their transgender clinics, they saw the number of patients double, triple, quadruple within the first couple of years,” Hollander said.
Considering desperate measures
But despite expanded services, cost will remain an issue for many families. Puberty blocker injections and patches can cost $30,000 or more a year. Mazy’s father, Donte Gilleylen, is unemployed and planning to go back to school to obtain a master’s degree, and her mother is on disability after being critically injured in a car accident. Because of her family's situation, Mazy's health care is through Medicaid, which covers none of the cost, except the doctor visits.
Acting on the advice of friends, Amber Gilleylen started a GoFundMe campaign. After several months, the total is less than $1,000.
Recently, she found a pharmaceutical company online that may help with the cost. But she’s wary.
“You know when you're looking on the internet, a lot of that stuff is a scam,” Gilleylen said. “So it's hard to decipher what is what.”
Still, she’s determined to somehow find the money.
“Honestly, I would be willing to donate a kidney if I could, and that is the real truth,” Gilleylen said. “My child’s health and well-being is above all, so, you know, for me, there’s no price.”
Mazy’s story resonates with Will Copeland, a young transgender man from Creve Coeur, who studies international business at Tulane University and has a job waiting for him in New York City after graduation. Nine years ago, he began taking blockers to avoid female puberty, including breast development.
“I don’t want to imagine what my life would be like today if I hadn’t had access to that,” Copeland said. “I don’t think I would have ever tried to commit suicide just because I don’t think I would be able to do that to my family or to myself — but I wouldn’t rule it out.”
Copeland’s treatment was mostly paid for by insurance though his father’s job.
“I think the first year, insurance covered almost all of it, which is insane,” he said.
‘It’s OK to be yourself’
As it turns out, Mazy’s family has a little more time. Last week, Mazy saw an endocrinologist. Blood tests showed she’s not in puberty yet and the doctor wants to test her again in six months.
For now, Mazy’s enjoying a successful first week at Hoech Middle Achool in the Ritenour School District, where students don’t know she’s transgender.
“I just want to be a regular girl,” Mazy said.
For the past few years, Amber Gilleylen has home schooled Mazy. She’s been in contact with the district all summer. Officials helped her make a plan in which Mazy will use girls’ restrooms but change clothes for gym in the nurse’s office, at a time that coincides with taking a daily medicine.
“They really care about Mazy and I see that,” Gilleylen said.
Mazy’s taking with her to school every day an important lesson she learned at home.
“It’s OK to be yourself. It’s all right. You don’t need to be afraid,” Mazy said. “Just live who you are and don’t let anyone tell you who to be.”
It’s something she’s also taught her family, including her father.
“I have learned from her about unconditional love and how to rethink my ethics and my stereotypes within myself,” Donte Gilleylen said. “I need to be open and be accepting, on many levels.”
Follow Nancy on Twitter: @NancyFowlerSTL