‘They told my mom, ‘I don’t think she will survive.’ All of my family came to say goodbye.’: Woman shares 24-year journey to rare Ehlers-Danlos Syndrome diagnosis, interabled love story

More Stories like:

“My story began before I was even born, when my mom was told there was something wrong with the baby. They told her they didn’t know what the outcome would be and offered her alternatives to continuing the pregnancy because they didn’t think I would survive—if I did, they didn’t think I’d ever walk or talk. Well, those doctors would be surprised to learn I started talking at a young age and haven’t stopped talking since – ha! My whole life I have had to overcome the odds, and even overcome the low expectations set for me. I was born two months early with low muscle tone, hydrocephalus, scoliosis, and an undiagnosed genetic condition in September 1991.

Newborn baby girl lays in the NICU ward while attached to wires
Courtesy of Melissa Hayden

I began needing interventions immediately with therapies, procedures, and medical care for things like club feet, a hernia, and brain surgery to implant my first shunt for hydrocephalus into my brain. Hydrocephalus is a condition that leaves you unable to drain excess fluid from your brain, and you rely on a tiny tube called a shunt to keep you alive. Unfortunately, this tiny tube has the lowest success rate out of any medical device, so people who have this need many surgeries over their lifetimes to get new shunts. I’m 30 years old and have had about 12 brain surgeries so far for this.

Little girl with unknown chronic illnesses sits in a stroller with colorful bandages wrapped around her legs
Courtesy of Melissa Hayden

I grew up in and out of the hospital and missed a lot of school for therapies and appointments. I have had over 30 surgeries in total. I needed my spine fused three separate times growing up, between 5 years old and 12 years old. I also needed surgery on my feet and shoulder among other things. I remember even as a young child having to leave preschool during nap time while the other kids slept so I could be rushed to physical therapy and come back in time just as the kiddos were waking up. I remember knowing I was different, but also sometimes it was hard to remember this wasn’t normal for other kids, too.

Sometimes it would surprise me other kids didn’t have more than one well-child doctor visit a year. It was hard always being singled out. I’d be stuck inside for recess a lot of days, or have to sit on the sidelines at gym class. I wouldn’t get to go everywhere other kids did, and I spent some birthdays and holidays stuck in the hospital too. There were many things I missed because I was recovering from one surgery or another, which was hard and always seemed unfair. Life growing up early on was hard, very hard sometimes I’ll admit. Some years I had a few surgeries each year, but other years I got a bit of a break, which allowed me more time and space to really be a kid.

Little girl with unknown chronic illnesses sits on her porch dressed in a bunny costume for Halloween
Courtesy of Melissa Hayden

I really did have the best childhood too, and as much as I got the short end of the stick in some areas, I can thank my mom for being able to see the glass as always half full. She made sure we ‘celebrated’ finishing an appointment with something positive, even if it was a McDonald’s ice cream or a trip to the park. She helped me have a positive outlook on life, and for it, I’ll be forever grateful. I had a lot of struggles, but I also got to learn how to play the violin, swam in lakes each summer, learned to cook, sew, and loved to read too. My mom made sure anything I became passionate about, I was able to really learn and have fun with it.

Young girl poses in front of the Christmas tree in a red sweater while hugging a black poodle
Courtesy of Melissa Hayden

As an adult now raising my own daughter, I am aware I missed out on a lot, but my perspective then and still today is always to focus on everything I was able to do. I never felt like my life wasn’t fulfilling. My most mentally and physically grueling surgery was in 2012. I was a sophomore in college and I ended up needing a shunt revision in July. In August, the new shunt broke, and I was in surgery a month later. The surgery definitely changed the trajectory of my life—I didn’t wake up (to the point of being able to remember anything) until September one month later.

I had every complication in the book. I was on a ventilator for a week, in the ICU for a month, and needed an entire year to recover before I could go back to college. I went from 90lbs down to 75lbs—so thin my mattress hurt my hips and shoulders because my bones were just beneath my skin. I could barely walk from my hospital bed to the door and back before needing to nap for hours. I had three blood clots, and at one point, all of my family came to say goodbye. It took me months of rehab to get back to semi-normal, and I still have nerve damage from being so sick they couldn’t roll me over for days in the ICU.

Courtesy of Melissa Hayden

The nerve damage taught me the meaning of ‘writhing in pain,’ which was something I had only read about in novels, when they were trying to be extra dramatic. While the surgery was by far the scariest part of my life so far, everything happens for a reason (as much as I hate this saying!). Without me being pushed back a year in school, I would never have met the man at a charity event, who two years later would hire me for my first job (where I am still working today 6 years later), and would never have met my husband.

Woman living with rare chronic disease and her husband under the arch entrance of college
Courtesy of Melissa Hayden

I met my husband by chance because I was working with his twin brother who I only vaguely knew—we were working at the same college internship program in the same company just two floors apart. One day I was out with some friends and thought I saw Josh and started talking to him…turns out it was his twin brother Matt! We began talking and started dating shortly after. Our relationship is…silly. And loud. And full of yummy food! We love to have fun—we have 8 nerf guns in the house. Sometimes I wonder who let these two kids live alone without adult supervision—and we love to travel and explore.

Courtesy of Melissa Hayden
Courtesy of Melissa Hayden

We had our honeymoon in Alaska, where we explored the tops of glaciers, Denali National Park, and the ocean on a cruise! It was absolutely MAGIC. We love to give back to others. I was very passionate about Dance Marathon, a college program I participated in, which donates to children’s hospitals. So when we found out our wedding day landed on my college dance marathon day, we knew we had to crash it in our full wedding attire. It was probably the favorite part of our day—seeing all the students dancing for a good cause, and their shock when the crazy couple in a wedding dress and suit walked in!

Courtesy of Melissa Hayden
Courtesy of Melissa Hayden

We love to play in our garden and love to make yummy food even more! We have a recipe we’ve perfected for our homemade pasta sauce. We take 20lbs of homegrown tomatoes and cook them for 12-14 hours until our sauce is done! Our favorite thing is having people over for dinners, so we can play in the kitchen together for a few hours before sharing the hard work with our friends and family! We have been together for seven years, married for three years, and we bought our first home in 2020, which is also when we brought home our puppy Molly! Molly was the center of our world for about a year before we brought home our baby girl in November 2021—we will be finalizing our adoption in the spring of 2022 and we couldn’t be more grateful.

Couple take a photo on the porch of their first house they just purchased together
Courtesy of Melissa Hayden
Couple take photos with their dog while holding a onesie announcing their adoption
Courtesy of Melissa Hayden

Some recoveries in my life were easier than others. I had shoulder surgery after college and I worked the night and the day after the surgery. Unfortunately/fortunately, I can say I’m a pro at recovering from anesthesia, so I am fully awake before I leave the recovery room—which tends to scare some of the doctors who come in expecting me to be asleep. Ha! I was able to work through college classes for two weeks in the hospital one year when I needed two brain surgeries a few days apart. I returned to classes the next week and took all my finals on time.

But other surgeries were tougher. After my spinal fusions, I was unable to return to school for a month each time due to infection risk, so those were tough for sure. And of course, my surgery in 2012 took me a year to recover. My doctors wanted me to drop out of college after that one, or move closer to home, but it wasn’t an option in my mind. I was determined to get back to my friends and the school I loved so much. Another condition I have is called FKBP14, related to Ehlers Danlos Syndrome.

Woman with rare chronic disease recovering from brain surgery with the brain surgeon sitting on a giant egg shell
Courtesy of Melissa Hayden

It took 24 years of testing to find a diagnosis, and I’ll never forget the day my genetics counselor Allison walked in the door and told me, ‘We’ve got it, we have a diagnosis!’ I was absolutely in shock because for 24 years I had test after test and they never knew what was causing so much of my physical issues. I have very loose joints that dislocate, my aorta is enlarged, my hands have arthritis, and I have vision and hearing loss—all parts of a connective tissue disorder. They finally discovered I was the tenth person in the world with my type of EDS, and it led me to find about 10 other families through the years with the same diagnosis.

This has been an incredibly fulfilling part of my life too because many of the families we found have young children. I was born before Google was created, so my mom never had a way to search for resources or help when I was young. These families have instant access to other people who have experienced the same exact things, and the power at their fingertips is insane. It is incredibly gratifying to be able to put a worried parent’s fears at ease when you have a pretty good idea as to what their child is experiencing, and it is incredibly special to finally see someone who looks like you when for 24 years I had never seen anyone else who looked like me.

I knew my husband was the one about six months or so into our relationship, maybe less, but we were driving up to see his grandma in Michigan. He is as close to her as I was to my grandma, and I absolutely loved that about him. On our drive up we had to stop at a few different stores because he insisted on picking up her favorite things—fresh raspberries from one store. Cinnamon jellybeans from another store—and I remember sitting in the car just looking at him in awe of the way he was taking such care to spoil and love on his grandma. This was the day I remember thinking I wanted to marry him.

Courtesy of Melissa Hayden
Courtesy of Melissa Hayden

He means the world to me. Dating someone with a disability isn’t for the faint of the heart sometimes, and he has handled the ‘medical side’ of me with such kindness and grace. He has never made me feel less than—nor should he, and I wouldn’t have stuck around if he had. Haha! He has always been so quick to help me if I have a hard day. But on the flip side, he would be buried in dirty laundry with an empty belly at work if I wasn’t around, so we really do feel like our relationship is 50/50. He needs me as much as I need him, and I can’t imagine my life without him.

Courtesy of Melissa Hayden

He makes me laugh harder than anyone. He has the kindest and most generous heart of anyone I know—sometimes to a fault, he’d give away everything we had if I let him!—and he is without a doubt the smartest guy I know. Our life now….gosh, sometimes I feel like I am living in a dream. The girl in the hospital bed in 2012, who could barely walk across the room, let alone around the block, she wouldn’t have believed me if I told her where she’d be in ten years. That she owns the most perfect little home with the most perfect garden and space to feed the birds, has the sassiest and cutest little poodle, the kindest husband, and the most beautiful baby girl. She also wouldn’t believe that, physically, she would be able to be walking her baby in a stroller, with her trusty poodle by her side, taking care of a home, husband, and a baby all while working full time.

Courtesy of Melissa Hayden

Life has a way of being full of absolute magic, and full of tragedies. Life is fun and stressful. Especially in my early 20s, I grieved my inability to have children by experiencing the birth process, but through adoption, I have a daughter who has brought so much joy and love to our lives. There is no difference in how we love her because we adopted her, and if you can focus your energy on the positives of life, life is so much more special. Our adoption story is one for another day, but it is another example of this. We worried and stressed so much about the adoption process, and it turned out to be the most incredibly special—emotional, challenging, fulfilling—and magical thing.

Courtesy of Melissa Hayden

Our daughter’s birth family was so gracious to us. Her birth mother is the strongest woman we know, and we are grateful she will always know where she came from because we have been able to continue our relationship with her. I dreamed of owning my own home and having a garden, being married, having a dog, and being a mother. I can’t believe I get to say, ‘I made it!’ I would love to be able to send those doctors from 30 years ago a postcard. To be able to tell them I made it! I’m talking and teaching my daughter to talk, I’m walking and will be teaching my daughter to walk!.”

Courtesy of Melissa Hayden
Couple take up-close selfie with each other during a winter walk
Courtesy of Melissa Hayden

This story was submitted to Love What Matters  by Melissa Hayden. You can follow her journey on InstagramSubmit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this:

‘You’re just a whiny child.’ The doctor sent me home with pain medication. It was a miracle I survived through the night.’: Woman with rare chronic illness shares childhood spent in hospitals

‘Clay and Megan adopt even though they already have a lot of kids!’ I was 4 months pregnant with our sixth baby.’: Mom of 7 shares family journey through miscarriages, adoptions, ‘We all work as a team’

‘We have a 3-year-old boy. His mother is homeless. No one will take him.’ Our jaws fell open. ‘We’ll be at your house in 30 minutes!’: Couple adopt 4 children from foster care, co-parent with birth mom

‘There’s only a 50% chance this procedure helps.’ I was out of options and exhausted. And then my brain surgery failed.’: Mom candidly shares chronic illness, life spent in hospital

Do you know someone who could benefit from this story? SHARE this story on Facebook to let others know a community of support is available.

For our best love stories, subscribe to our free email newsletter: