Being on the brink of puberty is scary and expensive for this transgender kid and her family – St. Louis Public Radio

Mazy Gilleylen of Overland is looking forward to her 12th birthday in September. But shes dreading what comes next.

Approaching puberty is alarming for transgender kids like Mazy. The changes puberty brings can feel like their bodies betrayal of who they 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.

Mazys parents are struggling to pay for what they see as 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.

((AUDIO: St. Louis Public Radio's Nancy Fowler visits Mazy Gilleylen and her family in their Overland home.))

My heart tells me Im a girl

Mazy was assigned a male gender at birth. But ever since she could talk, shes insisted she knows who she really is.

My heart tells me Im a girl; Im 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 as she approaches her 12th birthday next month, 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 Im 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.

Abby Hollander, a pediatric endocrinologist of St. Louis Childrens Hospital said research supports the need for these drugs. 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 that make the treatment and the risk benefit ratio weigh heavy on the benefit side, Hollander said.

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 theyre around 17, and then begin hormone replacement therapy, with estrogen or testosterone.

Pediatric endocrinologists at Childrens Hospital currently 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, L.A. when they developed their transgender clinics, they saw the number of patients double, triple, quadruple within the first couple of years, Hollander said.

$30,000 or more a year

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. Mazys father is unemployed and planning to go back to school for a Masters degree, and her mother is on disability after being critically injured in a car accident. Mazy gets her health care 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, Gilleylen found a pharmaceutical company online that may help with the cost. But shes wary.

You know when you're looking on the Internet, a lot of that stuff is a scam, Gilleylen said. So it' hard to decipher what is what.

Still, shes 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 childs health and well-being is above all, so, you know, for me, theres no price.

Mazys story resonates but also contrasts with that of 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 dont want to imagine what my life would be like today if I hadnt had access to that, Copeland said. I dont think I would have ever tried to commit suicide just because I dont think I would be able to do that to my family or to myself but I wouldnt rule it out.

Copelands treatment was mostly paid for by insurance though his fathers job.

I think the first year, insurance covered almost all of it, which is insane, he said.

Its OK to be yourself

As it turns out, Mazys family has a little more time. Last week, Mazy saw an endocrinologist. Blood tests showed shes not in puberty yet and the doctor wants to test her again in six months.

For now, Mazys enjoying a successful first week at Hoech middle school in the Ritenour School District, where students dont know shes transgender.

I just want to be a regular girl, Mazy said.

For the past few years, Gilleylen has home-schooled Mazy. Shes been in contact with the district all summer. Officials helped her make a plan in which Mazy will use girls restrooms but change for gym in the nurses office, at a time that coincides with taking a daily medicine.

They really care about Mazy and I see that, Gilleylen said.

Mazys taking with her to school every day an important lesson she learned at home.

Its OK to be yourself. Its allright. You dont need to be afraid, Mazy said. Just live who you are and dont let anyone tell you who to be.

Its something shes also taught her family, including her father Dante Gilleylen.

I have learned from her about unconditional love and how to rethink my ethics and my stereotypes within myself, Dante Gilleylen said. I need to be open and be accepting, on many levels.

Follow Nancy on Twitter: @NancyFowlerSTL

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Being on the brink of puberty is scary and expensive for this transgender kid and her family - St. Louis Public Radio