More Than Just the Two Percent


OFFSTAGE VOICE: One in every 2,000 women
has Turner Syndrome. NARRATOR: And I’m that one! That’s right, I am one of 2,000. People like to use that number a lot. Sometimes to remind us that there are more
of us than we think. And sometimes to show us just how unique we are. And what is Turner Syndrome you ask? We’ll get to that in a moment. First, there’s another number I want to
share with you: two percent. Just two percent of those with Turner Syndrome
actually make it to birth and become one of 2,000. Two percent. Here’s the story of one of the 98 percent. A girl with Turner Syndrome who was never born. But today, she becomes one of the 2,000. TS BUTTERFLY: Some of my earliest memories
are that of doctors. They weren’t frightening. They were kind, but I couldn’t quite understand
what they were saying. NARRATOR (as GENETICIST): Your daughter’s
blood sample reveals she has classic Turner Syndrome. That means instead of having two X chromosomes,
she only has one. She’s going to be fine, but we’re going
to have to run some more tests to see if she has any of the commonly associated health impacts. We’ll check her heart and kidneys to start. Don’t worry—I have a medical team who
will help guide you and your daughter through the medical care she’ll need. TS BUTTERFLY: Now that I’m a little bit
older, I guess you could say that’s when I was diagnosed. But diagnosis isn’t just one moment in time… NARRATOR: …it’s an ongoing conversation. NARRATOR (as MOM): Wake up! Time for school! (“Just a Girl” by No Doubt starts to play.) TS BUTTERFLY: Wait! What about my shot? NARRATOR (as PEDIATRIC ENDOCRINOLOGIST): One
of the most common impacts of Turner Syndrome is short stature. Women with Turner Syndrome are usually no
taller than four foot nine, but growth hormone can help girls gain a few extra inches. It’s a daily injection that you can give
your daughter until she’s about 13—we’ll talk about why soon. You can even help her learn how to administer
the injection herself. TS BUTTERFLY: Mom! Can you help me with my shot? NARRATOR (as MOM): I’ve got it! TS BUTTERFLY: Wait! Can I try it myself? NARRATOR (as MOM): Sure, go ahead. TS BUTTERFLY: I did it! NARRATOR (as MOM): Woo! NARRATOR (as MOM): Okay now, you’re
going to be late. Catch the bus! Hey your backpack! (“Just a Girl” by No Doubt continues to play.) OFFSTAGE VOICE: I found these weird things
in my sister’s bathroom yesterday. They looked like little mouse toys for a cat,
but my mom told me they’re for your period. She told me that I’ll get my period soon
because my boobs are already pretty big and I have to wear a bra so that boys
don’t stare at me. It’s kind of gross but my mom says
it means I’m finally becoming a woman. NARRATOR (as REPRODUCTIVE ENDOCRINOLOGIST):
Girls with Turner Syndrome often don’t go through puberty on their own. Estrogen can help. It will also help to increase her bone density
to decrease the risk of osteoporosis. Your daughter can start estrogen right around
the time of puberty as she’s finishing growth hormone. Estrogen closes growth plates, so it’s difficult
to get both benefits at once. Unlike growth hormone, there are no injections
to give: she’ll just take hormone replacement pills or use a patch. TS BUTTERFLY: I’m going to start the patch
soon, but until then, I remember what my mom always says: I am just as much of a
woman as anyone else. (“Just a Girl” by No Doubt finishes playing.) TS BUTTERFLY: Hey Mom! NARRATOR (as MOM): Homework time! (TS BUTTERFLY sighs.) NARRATOR (as DEVELOPMENTAL PSYCHOLOGIST):
Some girls and women with Turner Syndrome may have nonverbal learning disorder, or NVLD. This can make math, multitasking, and even
driving difficult, which can lead to frustration in and out of school. You can work with you daughter to practice
skills she needs for success, building on her strengths in verbal learning and organization. Your school may also be able to help. TS BUTTERFLY: I may be small, but I’m mentally
just a big as anyone else! (“Pomp and Circumstance” plays). TS BUTTERFLY: We come together today
sharing so much. But what also brings us together are all of
the things that make us different. These differences are not limitations. The only limitations are those we put on ourselves. Instead, we leave here today with one
goal: to embrace our differences as strengths. When we do so, we take control of our
own circumstances. I don’t know what the future holds, but
I know we will each have a say in ours. Join me today as we find our own path! (Applause.) TS BUTTERFLY: I still don’t know what
my path holds. OFFSTAGE VOICE: What about kids? TS BUTTERFLY: Well…I… NARRATOR (as A FERTILITY SPECIALIST): Many
women with Turner Syndrome cannot have children on their own. They may not produce eggs, and their doctors
may tell them it is too dangerous to carry a child. But there are options. TS BUTTERFLY: I guess I could look into fostering
a child or adoption. NARRATOR (as A FERTILITY SPECIALIST): Or if
you get approval from your doctors, you could try in vitro fertilization, but it can be
very risky for women with Turner Syndrome, particularly if they have a heart condition
as a result. TS BUTTERFLY: Maybe I’ll marry a guy who
already has a kid and become a step mom. Or as I like to say, a Bonus Mom. NARRATOR (as A FERTILITY SPECIALIST):
Surrogacy may also be an option. TS BUTTERFLY: Or maybe kids aren’t a part
of my future and I will be happy living childfree. NARRATOR (as A FERTILITY SPECIALIST):
After all, infertility will mean nothing by the time you’re 60! TS BUTTERFLY: I know I have so much to look
forward to, but all of this would be a lot easier if there were more people
like you I could talk to. NARRATOR: Well of course there are! There’s a whole world of butterflies out
there just waiting to meet you. (“She’s a Butterfly” by Martina McBride
begins to play.) TS BUTTERFLY: Butterflies? NARRATOR: That’s what we call ourselves—girls
and women with Turner Syndrome. We’re butterflies. We’re fragile but resilient. We’re small but make big changes in the world. And most of all, we come in so many colors. We’re each beautiful and unique. Let me show you. There’s so much you can find online. Like these guidelines for medical care that
you can share with your doctors. You can also talk with butterflies on Facebook. TS BUTTERFLY: Hi there! OFFSTAGE VOICE: Hi! TS BUTTERFLY: When were you first diagnosed? OFFSTAGE VOICE: I was so young I barely remember. What I do remember is being
surrounded by doctors. That’s how I know. TS BUTTERFLY: Me too! NARRATOR: There are all sorts of events that
are hosted around the country, from fundraiser walks to casual activities and lunches. And don’t forget the annual conference! TS BUTTERFLY: There are so many people here! NARRATOR: Well we aren’t going to meet anyone
just standing around! (“She’s a Butterfly” by Martina McBride
gets louder.) TS BUTTERFLY: I still have so much ahead of me. And so much I’m unsure of. How many people will I date? Will I ever get married? What will be my first job? Will it turn into my career? Where will I move to? What places will I see? Where will I choose to retire? I’m scared, but also so excited. Through it all, I know that Turner Syndrome
won’t slow me down! (“Que Sera Sera” by Doris Day begins to play.) TS BUTTERFLY and NARRATOR (Singing):
When I was just a little girl I asked my mother, “What will I be?” “Will I be pretty?” “Will I be rich?” Here’s what she said to me: “Que sera, sera” “Whatever will be, will be” “The future’s not ours to see” “Que sera, sera” “What will be, will be” (NARRATOR coughs.) TS BUTTERFLY: Of course, I do need to stay
on top of my doctors’ appointments. NARRATOR (as CARDIOLOGIST): Pediatric endocrinologists will guide your child’s medical team. Once she’s old enough, she should transfer
to a general practitioner she trusts. She can use nonprofits and other butterflies
to help her find the best doctors available. You may find you need fewer doctors than when you were younger, but it’s important to get your heart routinely screened, even if you never
had any issues as a child! TS BUTTERFLY: Sorry, what did you say? NARRATOR (as CARDIOLOGIST): Ah, better get
your hearing checked while you’re at it! Many women with Turner Syndrome will end up
needing hearing aids. TS BUTTERFLY: Like I said, I still have so
much ahead of me. So many choices to make and so many paths
I may end up walking down. Turner Syndrome will be a part of some of
those choices, but not all of them. It is part of me but it does not define me. I am one in 2,000 but I am still one of a kind. But not everyone can be one in 2,000. Like me. I am one of the 98 percent of those
who are never born. So to end my story, I’d like to honor those
who have lost their butterflies too soon. (“Wonder” by Natalie Merchant begins to play.) TS BUTTERFLY (Singing): Doctors have come
from distant cities, just to see me Stand over my bed, disbelieving what they’re seeing They say I must be one of the wonders Of God’s own creation And as far as they see they can offer No explanation NARRATOR (Singing): Newspapers ask intimate
questions, want confessions They reach into my head to steal, the glory of my story TS BUTTERFLY and NARRATOR (Singing): They
say I must be one of the wonders Of God’s own creation And as far as they see, they can offer No explanation TS BUTTERFLY (Singing):
Ooo, I believe Fate smiled and destiny Laughed as she came to my cradle Know this child will be able Laughed as my body she lifted Know this child will be gifted With love, with patience, and with faith She’ll make her way She’ll make her way (Applause). (“Que Sera Sera” by Doris Day plays.)

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