Snow Baby: The Ashley Schmitt Story
On January 17, 1994, 3-year-old Louisville child and “miracle baby” Michelle Schmitt needed a life-saving liver transplant. The call came; the organ donation was available, and her family needed to fly her to Nebraska as soon as possible. However, the entire I-64 interstate was shut down, covered in a very unexpected 16 inches of snow.
Several in Louisville’s community sprung into action, coming together to get “Snow Baby” Ashley Schmitt to Omaha to receive her life-saving transplant.
The story of the family is now chronicled in an upcoming movie, “Ordinary Angels,” starring Hilllary Swank, which will debut February 23.
Below is the story of the Snow Baby and her family, as told by Michelle’s sister, Ashley, who suffers from the same rare condition.
The definition of a hurdle is an obstacle or difficulty. To say that my family has overcome many hurdles is an understatement. What started out as a happy family of three: a mother, father, and daughter, soon transformed into a different kind of family of three; leaving just a father to raise his two daughters alone. Each family member is stricken by grief from loss, illness, financial burdens, and more. But with each hurdle the Schmitt family faced, they got through them together, along with help from some Ordinary Angels they encountered along the way.
When I was born, the doctors diagnosed me with a liver deficiency called biliary atresia. They told my parents (Ed and Theresa Schmitt) that I would need a liver transplant to survive, and quickly. At the time, they did not do pediatric transplants in Louisville, so my parents went to visit a few transplant centers to see which would be the best fit for us. One of the last places they visited was the University of Nebraska Medical Center in Omaha. They felt at home right away, and knew this was the place. There, I had to go through some testing and blood work to get added to the transplant list.
While waiting for a liver transplant, my parents visited a genetic doctor to see if this could happen again. Afraid that I might not have much longer to live, they contemplated having another child so that I could at least meet that child before I succumbed to my disease. But they wanted to make sure that a second child would not be born with biliary atresia as well — if they did choose to have another. The doctor said it was 99.9 percent unlikely to happen again, and along came Michelle. Not long after Michelle’s birth, she started showing signs of liver failure. Doctors started the process of getting Michelle on the transplant list next. Our mom had to quit her job and stay home to take care of us.
On October 1, 1991, my parents received a call that a liver was available for me. At the time, we didn’t have a lot of money. Our dad was working multiple jobs to make ends meet, but between the medications we each had to take and the doctor’s visits, it was hard to keep up with the bills. As you can imagine, they didn’t have extra money laying around for a private plane to get to Omaha. Our dad called his parents, Earl and Barbara Schmitt, to see if they could help. They wrote a check so we could get to Omaha for my lifesaving liver transplant. After receiving my transplant, I was a healthy and normal 3-year-old. For the first time ever, I was able to eat and play with a normal amount of energy. Now we just had to wait for the call for Michelle to receive hers.
Over the next year, our mother had been sick off and on with sinus issues. Her doctor recommended getting a sinus scrape done. The procedure went well, but she was not regaining consciousness. The doctors were running every test they could think of to see what was going on. Finally, an infectious disease doctor came in and diagnosed her with Wegener’s disease. At this point she was in multi-organ failure and there was nothing more they could do. After six weeks of watching his beloved wife not waking up from a “simple procedure,” he finally had to say goodbye. My dad was now faced with the reality that he would be raising two daughters alone, and not just two normal daughters; two critically ill daughters; a daughter who just had a liver transplant and a daughter who was waiting to have her liver transplant. My dad called upon his parents, and they stepped in to help him raise us. This turned out to be the best decision he ever made, because I got to grow up with my grandparents, too.
Time went by, and each day we were waiting for the phone call that a liver was available for Michelle. On January 17th, 1994, the city of Louisville woke up to 17 inches of snow. I remember Michelle and I being excited to see the snow and to go out and play in it. The phone rang and my grandma answered. It was the call we had been waiting for; the transplant center in Omaha was calling to say there was a liver available for Michelle. But the city was shut down; no one was able to come in or get out. I remember seeing a reporter on the news standing in the middle of I-64 because it was vacant. Grandma called her friend and hairdresser Sharon Stevens (now Evans), to see if she could help. Sharon had previously helped to raise money for my family due to the financial strain of the medical bills from Michelle and I, as well as from when our mother was in the hospital. Sharon started calling around to local news stations and radio stations to put the word out.
[Pastors] Bob Russell and Dave Stone offered the Southeast Christian Church parking lot on Hikes Lane for a helicopter to land to take Michelle to the airport to get on a private plan that was generously donated by Jim Patterson. Now there was a call out for people to bring their shovels and help shovel the parking lot so the helicopter could land. People from all around came and started shoveling the parking lot. Meanwhile, WHAS-11, a local news station, came to our house in a 4-wheel drive. One of the people in the SUV was Beth Murrell. They loaded up the SUV with me, Michelle, Grandma, and Dad. My Pappaw stayed behind to take care of our dog Bitsy as well as the house.
When we got to the Southeast parking lot we were humbled and overwhelmed by the sea of people shoveling snow. Sr. Pastor Bob Russell and Pastor Dave Stone greeted us as we exited the car. The helicopter only had room for two, so Grandma opted to ride with Michelle. Beth Murrell said they would do their best to try and get Dad and I to the airport and meet them so we could ride in the plane to Omaha. As the helicopter took off, the crowd cheered. Beth Murrell and WHAS-11 were able to get Dad and I to the airport in time before Grandma and Michelle took off. Beth Murrell flew along with us to stay in contact for updates, and she even helped watch me so my Dad and Grandma could be with Michelle at the hospital. After Michelle recovered from her transplant, she became a lively 3-year-old just like I had. She had color in her skin, energy to play, could eat and drink normally, and could finally smile and be happy!
With all the media coverage, we eventually were able to meet Michelle’s liver donor family, The Friesen’s from Wichita, Kansa. Orin and Bekki had a 7-year-old son named Brian who had passed away from a brain aneurysm on January 16th, 1994. Not long after Brian passed, Orin and Bekki would find drawings and notes around the house regarding Jesus, Heaven, and a grave site. Over the years, we have kept in touch, and both families have traveled to see one another and spend time together.
We were able to receive a lot of financial help before, during, and after our transplants, from Sharon doing fundraisers to Kosair for Kids helping with medical bills. There were hundreds of “Ordinary Angels,” aka ‘normal’ people that went out of their way to show us support after our liver transplants.
Growing up, Michelle and I lived relatively normal lives — as much as we could. We did get sick easier than most kids due to the anti-rejection medications we were on lowering our immune system. What may take a child 2-3 days to get over, it would take us a week or more — and sometimes, a hospital stay to get over. Kosair Children’s Hospital in Louisville became our second home at times. We both had more than our fair share of hospital stays as kids, but that never slowed us down. Our Dad and Grandparents went above and beyond to give us a happy life. From vacations to birthday celebrations, and holidays, they always tried to make it fun.
A doctor in California reached out to our pediatric gastroenterologist in the early 2000’s. She had heard about Michelle and I and wanted to test us for Byler's Syndrome. It was unheard of for one family to have two children with biliary atresia. She tested me, Michelle, and Dad. Since our mother had passed away, the doctor was unable to test her. It took a while for the results to come back, but she confirmed that Michelle and I both had Byler's Syndrome, which is a genetic disease that causes liver damage at birth. Although our parents did not have it themselves, they both had the gene for it, which caused us to have it. Talk about one in a million. Byler's syndrome is rare and only happens in 1-in-50,000 to 1-in-100,000 births.
In January of 2003, Grandma ended up getting sick, and was hospitalized. Our grandma had COPD and asthma and it had gotten worse over the years. She eventually ended up passing away on January 17, 2003. I didn’t remember Mom much, and Michelle remembered her even less. Grandma was like a mother to us in many ways; Michelle even grew up calling her “Mama.” Losing her was hard for both of us, but I knew it was my time to step up and help take care of Michelle. I was just 14 years old, and Michelle was 12 years old. We continued and enjoyed life as grandma would have wanted us to do. Eventually, we both received our drivers’ licenses, went to prom, graduated high school and college; Michelle with a bachelor’s degree and I with a Masters.
In January of 2011, almost 20 years after my liver transplant, I started to become very sick and was hospitalized for four weeks. My kidneys were starting to shut down. One of the anti-rejection medications I had to take for many years after my liver transplant had caused a lot of kidney damage. We knew this could happen, but we didn’t know it would be this soon. While I was in the hospital, the goal was to get me hydrated, get my kidney working a bit better, and they eventually put a fistula in my arm to prepare me for dialysis in the future. After a month in the hospital, I was able to go home. Before I got sick, I was in grad school working towards getting my MBA in business healthcare management. I had to put that on hold. At the time, I was working as a pharmacy technician at Kroger Pharmacy. I took some time off work, but when I did go back, it was a lot harder standing up for long periods than I thought it would be. My experience with organ failure was different this time around. I didn’t know what it was like to experience liver failure because I was so young. Here I was at 22 years old, and I felt like I was in my 80’s. I needed help getting up; it was hard to stand for long periods of time or walk long distances. I was throwing up regularly, and I didn’t have much of an appetite. I remember my 23rd birthday and how it was a struggle just to get out of bed that day because of the pain. We went to an Italian restaurant where I barely ate anything, and I love Italian food! I looked in the mirror and didn’t recognize myself anymore, I had lost so much weight.
My best friend Crystal, who Michelle and I went to elementary school with, volunteered to get tested to donate a kidney to me. She used to joke with us, “If you ever need a kidney, I’ve got two!” We used to laugh, but now it was a reality. She contacted the transplant center and started going through the process to get tested. We had to wait for them to come back to see if we were a match. On June 2, 2011, I received a call from the nurse coordinator at the transplant center letting me know that I was officially on the transplant list. We celebrated and started the waiting period. Even if you have a potential live donor, they still put you on the transplant list.
On June 4, 2011, I received a call from the nurse coordinator at the transplant center around 2AM telling me I needed to get to the hospital because there was a potential deceased donor’s kidney available. Dad drove me to Jewish Hospital; this time we didn’t need a plane to get to a transplant center. On the way, I was thinking that this kidney probably won’t be mine. They warned us that we could get called in several times, and the kidney may go to someone else. I was mentally preparing myself for that; after all, it had been less than two days since I had been on the transplant list.
We got to the hospital, and they admitted me right away. They performed tests and took bloodwork to confirm I was well enough to receive the transplant. Around 10AM that morning, the transplant center called me and said the kidney was going to be mine. My dad and sister started crying and I just smiled, happy that I was getting yet another chance at life. The surgery went well and the next day,my dad said how much better I already looked. As time went on, I could tell a huge difference of how I felt from before and after the transplant. It truly was a new lease on life.
About a month and a half after my kidney transplant, Michelle started to get sick. She had a seizure due to her electrolyte levels being so low; she had to be rushed to the hospital. She eventually came to, but her kidneys were now shutting down. They started the process of getting her on the transplant list. Crystal again stepped in and got retested for Michelle. Eventually her results came back, and they were a perfect match! The transplant center scheduled their surgeries to be performed on November 1, 2011. Both of their surgeries went well, and Michelle looked better the next day just like I had. She was up and eating and ready to go. Crystal took a couple days to get up on her feet, but that’s because it’s always harder on the donor as they are getting something taken out of them. Once Crystal was up and about, the first thing she wanted to do was to see Michelle. Her parents helped her down the hall to Michelle’s room. It was a special moment for both Michelle and Crystal. Our experiences were just two of many examples of how the Kentucky Organ Donor Affiliates and Donate Life Kentucky Trust have worked to make this life-saving gift possible.
I went back to finish my MBA three months after my transplant and graduated in 2013. Just a year after my transplant, I was able to meet my kidney donor’s family! Natasha Murrel died in a boating accident at Taylorsville Lake. She was studying to be a nurse and expressed that she wanted to be an organ donor one day. Her mother, Donna, donated her organs, and I ended up with her kidney. Crystal and Michelle surprised me with a birthday dinner party and invited Donna and her oldest grandson, who was Natasha’s son. It was my first time meeting them and it was a special moment. There are no words I can ever express for their loss. Natasha made a difference in my life and those around me.
Pappaw ended up getting sick and having a mini stroke in 2016. He eventually passed away on October 16, 2016, just a day after his 85th birthday. Grandma and Pappaw both meant a lot to Michelle and I. They helped our dad raise us. Pappaw played a big part in Michelle and I believing in God and going to church. He was a jokester, nice, and he spoiled his grandkids. He treated everyone with respect no matter their race, religion, background, or what they looked like. When Pappaw made us a promise, we knew he would keep it; it may take him a while, but he always followed through. He taught us both how to ride bic
Michelle went on to work as a medical assistant for the Novak Center here in Louisville, which is a pediatric doctor’s office. She even got to work with some of the doctors that took care of us when we were younger. She loved her job and loved seeing the kids come in every day, getting a sense of fulfillment, as if it was her turn to help other kids that had illnesses. She ended up getting married to a wonderful man named David in 2015. They later bought a house and adopted two dogs, Chewie and Reesie.
On May 7, 2021, Michelle passed away at the age of 30 from a stomach aneurysm. It was quick and sudden, a shock to us all. Over the years, Michelle and I had been through a lot, but I never worried about one of us dying, because we always somehow made it through. At her visitation and funeral, we had several people come up to us and say, “I know you don’t know me, but I shoveled snow that day in the church parking lot.” So many people came to pay their respects to Michelle, the “Louisville Snow Baby.” This is what she was referred to throughout her life, and so many people would recognize her as just that. We would often be out in public, and someone would walk up to us and ask us if she was the “Snow Baby.” Once replying “Yes, I am,” some of them would share their stories about how they shoveled snow during that snowstorm in 1994, and she got to personally thank them for saving her life.
In 2021, I was able to purchase my first house. I have been working my way up for nearly nine years now at Onco360 (a mail-order Oncology Pharmacy) and am now a Senior Manager. I absolutely love my job, and not many people can honestly say that. I also have a beautiful dog named Winter. She’s a 9-year-old lab/pit mix, and she’s the sweetest scaredy-cat dog you’ll ever meet.
I am truly blessed to be on the receiving end of all the people who have helped my family over the past 35 years. I wish I had the opportunity to thank each and every person, and to give back as much as I have been given, though I give as much as I am able both in time and money. God has performed so many miracles for my family over the years. He used ordinary people working like angels to orchestrate each of them. The movie about my family, “Ordinary Angels”, will be coming to theaters on February 23, 2024. We hope that it sends a message about faith, community, and organ donation. Without those three things, Michelle wouldn’t have lived 30 years, and I still wouldn’t be here today.
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