Today Would Have Been Her 31st Birthday
Collecting and editing these “My TS Stories” during Awareness Month and throughout the year for other Turner Syndrome Society communications like the TSS Connect Newsletter and the e-newsletter is something I’m passionate about, and something I usually enjoy. Doing this work and sharing your stories here is both an honor and a privilege.
Many of you who’ve submitted your stories know I’ll often call or email you asking for a bit more - I’ll ask for a photo, or a photo without snapchat bunny ears, or I’ll ask you tell me about something you're passionate about in your life. Sometimes I might work on your story right away, and sometimes I save them and work on them when we are talking about a topic in your individual story, or when the subject matter is timely in the TS community.
Today’s story is unusual in that it has three authors, (biological) sisters Dannielle Lopez and Ashley Roblero, and me, Becky Brown of TSSUS.
When Ashley first submitted her story on December 7, 2017, I added it to my February Awareness Month File and read it a few weeks later. When I did, I thought to myself, “This is a powerful story about a missed/late diagnosis, and about how a young couple built a family together in spite of their inability to conceive or adopt children.” I also decided to email Ashley and ask her for a different photo, because the one she sent was out of focus and wouldn’t show well on the webpage/blog.
On February 12, I emailed, “Hi Ashley, Thank you for submitting your story. Do you have a higher quality photo? This one looks like a screenshot of a photo and has a very low resolution, so it won't work for blog/website. I'd love to use your story, but I need a higher quality picture, please!”
She responded the same day “Hello! I have attached another photo to this email. If it is still not good enough, let me know and I will send another :)”
I circled back to Ashley’s story in July, I’m guessing when I was working on an issue of the TSS Connect or perhaps a blog post, and I realized her address and phone number was not filled in on her “My TS Story” submission form, so I emailed her again.
On July 3, 2018 I sent, “Hi Ashley, I'm just getting around to more of the “My TS Stories.” I see we don't have your address or phone number. I'd like to use your story, but need your address and phone number for the file - of course we don't publish that. Thanks.”
And then I received this response, “She is no longer with us. She passed about 3 months ago. This is her husband.”
Since Ashley’s passing, her sister Dannielle Lopez has become actively engaged in the TS community, and is doing what she can to raise awareness. She shares her story here about her beloved sister Ashley today, on what would have been Ashley's 31st birthday.
This is Dannielle’s Story
As a kid, I remember our mother telling us our sister, Ashley, needed to have open heart surgery as an infant. The best way to explain the surgery to us was to tell us she had a "hole" in her heart (it ended up being a bicuspid aortic valve). Her surgery was a success, and the doctors told our mother that Ashley shouldn't have any worries until about age 50 or so.
Growing up, Ashley saw a cardiologist every 3-5 years until she was about 15. With having routine good doctor's visits, she really thought she had nothing to worry about. She was young and healthy. At around age 18, she started to get concerned because had not yet started her period, nor had she developed full breasts. She went to a gynecologist, and they did a pap test. Nothing really came out of that appointment, and no one seemed too concerned.
Years later, she met the love of her life, Lusman. She was 25 years old, newly married and wanting to add to her family. They tried with no luck. So, she went to seek answers. After meeting with a new gynecologist and having a few tests done, it was finally confirmed. She had something called Turner syndrome and her ovaries had never developed.
Ashley was devastated. She didn't let that get her down, though. She started doing research about this new discovery, reached out to groups on Facebook, and made some amazing friends. For the last couple of years, Ashley had been trying to get a referral from her primary care physician to get in to see a cardiologist.
In 2017, she wanted to take control of her life, now that she had more knowledge about her body. She started eating healthier and exercising. She lost 40 pounds within 5 months before she passed away.
My last conservation with my sister was her texting me symptoms of what she thought was just a migraine. I knew, with what little medical knowledge I did have, that it wasn't a migraine. I told her to look into heart attack symptoms. She brushed it off because her chest didn't hurt.
I cannot stress now how important it is to learn all the signs and symptoms of aortic dissection, heart attack, stroke, congestive heart failure, etc.
Had the ER doctor looked at my sister's medical history (bicuspid valve surgery as an infant and Turner syndrome) and performed the proper tests, Ashley may still be here today. She passed away of a dissecting aortic aneurysm only days after leaving the ER on April 9, 2018.
After Ashley passed away, and after speaking with a few of her friends (women with TS) I've been determined to spread knowledge about Turner syndrome. Ashley was a miracle, just like all the infants, children, and women who have TS, and we now consider ourselves absolutely blessed to of had the 30 years with her we did! She was an absolute ray of sunshine.
Below is a copy of the story Ashley submitted originally. I did not know she had done this, nor seen it until after she had passed, and her husband showed it to me! Heartbreaking, yet beautiful.
This is Ashley's Story (written on December 8, 2017)
Hello! My story starts when I was an infant. I was my parents third child. After I was born, my mom noticed there was something the matter with me. Apparently, I wouldn't stop crying. She kept taking me into the doctors because she knew something was wrong. They basically told her she was crazy, and told her I was fine. Until one day, when I was only a few months old, I developed a double hernia. Then the doctors started to realize that maybe my mother wasn't crazy.
A nurse listened to my heart and realized there was something majorly wrong. They checked my blood pressure, and one side of my body had virtually no blood pressure, while the other side had extremely high blood pressure. They sent me to a larger children's hospital four hours away for emergency heart surgery, the entire time thinking I was just born with a heart defect. Little did they know, I had Turner syndrome.
Fast forward 25 years later . . . I had just gotten married and we wanted to start a family. I knew I would have problems getting pregnant because I had never had a period before. I have an extreme anxiety towards doctors, so I never went to figure out why. Well, starting a family was important to me and my new husband, so I made some appointments. The first doctor did some tests and gave me different medicines to try, but he couldn't figure out why I wasn't having a period. He thought it was PCOS, poly cystic ovarian syndrome. But when treatments for that didn't do anything, he said I needed a specialist.
During that time, my mom was doing her own research online, and came across information about Turner syndrome. Her and I shared the same doctor, so at her next appointment, she brought it up to him. He told her there was no way I had TS because it was too rare. She told me this, and I felt relief, because I knew what TS meant for my dreams of a family.
Well, I made an appointment with a gynecologist, figuring that would be the next step from my family doctor. She did a couple of tests, and within a few weeks I got the call from her office. It was Turner syndrome. I started crying. My husband came home and saw me crying, and asked me what was wrong, and I told him. He tried to make me feel better by reminding me that from what we knew, TS affected women differently, and not to lose hope yet.
We went to my appointment a few days later to get my full results. It was as we feared, classic Turner syndrome. I was told I wouldn't even be able to carry a baby due to my hormone levels. It was extremely devastating news, especially being a newly married couple with dreams of a family. Five years later, and we are still happily married. Even though it was hard at first, we got through it together. I was so lucky to have him; he has never left my side. He has been my support system and my rock; my family as well.
We have fully accepted it, as we just weren't meant to have a child of our own. Instead, we have adopted fur babies, dogs and cats, and a few birds, maybe a turtle, lol. They have become our children and we live a happy life. There are times when we talk about having a baby, through adoption or using a surrogate. But our situation is a little complicated, so adoption isn't really an option at the moment, and using a surrogate is way too expensive. We'd never be able to afford it. We may not have the child we wanted when we were first married, but we have a great life and are happy.
I do wish at times that I had gotten over my fear of doctors and had found out sooner about having TS, just so that it wasn't such a shock at such a bad time. I do believe there isn't enough awareness for Turner syndrome and that something should be done. I know I am not the only one to be misdiagnosed at first, or to find out later in life that I had it. I just wonder how many girls and women are walking around today without knowing they have Turner syndrome. Probably more than anyone knows. Besides the heart condition I was born with and not starting a period, I had no other clues to tell me I had TS, probably because it was not something we had ever heard of. That needs to change so that no one else has to find out about TS the way we did.