By Amber Fosler
When my friends and I partnered with Columbus Running Company to form Love 2 Reach (L2R), our goal was to use physical fitness as a way to reach out to our community. We would train to walk and run full and half marathons while raising money and volunteering time to a local charity. I was pregnant when we selected Ronald McDonald House Charities of Central Ohio as our benefactor. I knew it was a great organization but I could have never guessed what a huge impact Ronald McDonald House would have on my life.
I trained with L2R through much of my pregnancy. A month after my son, Elias, was born, I jumped back into training; this time with a run stroller and a sidekick. A week after Elias’s first training, he was diagnosed with a rare liver disease, biliary atresia. Two weeks later, he had major abdominal surgery at Nationwide Children’s Hospital but we were cautioned that most babies with biliary atresia need a liver transplant before they reach kindergarten. To say this was a stressful time is an understatement.
As he recovered from surgery, we tried to just settle into our life as a family of three. I struggled to find the balance of being back to work, being a new mom and training for a “comeback” half marathon. My husband has been amazing and knows that without running and race walking, I couldn’t possibly have any sense of balance. Getting in mileage is the one thing that is truly a stress reliever and he made sure I had time to get out there. Being out on the trails is the place I dealt with the emotions of my son’s diagnosis. It is where I went to feel like myself when the rest of my world felt like chaos.
Elias’s health took a very quick turn for the worse at the beginning of the year. I found myself crying as I called the airline to cancel my flight to Orlando for what was supposed to be my 10th half marathon. I was crying because my post-baby comeback race wasn’t to be. I was crying because my 6 month old baby was in Intensive Care.
January and February had more days in the hospital than at home. We faced life threatening complications, two calls to 911, two ambulance rides and two helicopter rides to Children’s Hospital of Pittsburgh. The only running and walking that happened was within the walls of a hospital.
Elias’s amazing pediatrician and the equally amazing team at Nationwide Children’s GI clinic saved my son’s life with his early diagnosis. They carefully monitored his care until his liver started to fail. Nationwide Children’s doesn’t currently perform liver transplants, which is how we found ourselves at Children’s Hospital of Pittsburgh.
My son was added to the national liver transplant list in January. By mid-February, Elias was in acute liver failure. He was running out of time waiting for a deceased donor. While my husband and I tried to get through each hour, each day with our very sick baby, a gift was in the works. My husband’s cousin, Zac, was evaluated to be a living liver donor. He was a match. On February 26th of this year, our hero, Zac, donated a portion of his liver to Elias. Zac selflessly gave Elias the gift of life and gave our family hope.
Since January, we have spent a total of 58 days at Ronald McDonald House of Pittsburgh. My involvement with Ronald McDonald House came full circle. The House came to my family’s rescue during a very dark time. They gave us a place to rest our head. A place to let out the emotions we tried to hide from Elias while he was in the hospital. It gave us a clean, safe place to bring Elias post-transplant before his team felt he was stable enough to return to Columbus. I have no idea where we would have gone without Ronald McDonald House. I went from knowing it was a great organization to experiencing it firsthand.
Elias is now 15 months old and is nearly 8 months post-transplant and he’s thriving. He’s gaining weight, meeting his developmental milestones and keeping us on our toes but now for good reasons. Life threatening complications have been replaced by an ornery boy unrolling toilet paper and playing in the cat’s water bowl.
Since we returned to Columbus in April, I’ve been able to hit the trails again. While I wasn’t able to commit to the Nationwide Children’s Hospital Columbus Half Marathon due to a follow-up surgery Elias had scheduled at the beginning of October, I trained as if I was going to race. However, the stars aligned in the 11th hour. Three days before the half marathon, after 11 days in Pittsburgh for his surgery, we arrived back home. Someone gave me a race bib and on Sunday morning, I lined up at the start for my tenth half marathon and my first post-baby half marathon. It was like a big party at the end of a very long and heartbreaking journey. Passing by Nationwide Children’s Hospital during the race was very emotional since we spent so much time within those walls. Running through the Angel Mile was even more emotional because not a day goes by that I don’t feel gratitude that we are one of the lucky families and our little man survived.
Once again, running and race walking has given me an outlet to process everything my family has been through this year. It’s given me an outlet to relieve stress but is a reminder to be thankful that Elias is still my training sidekick and L2R’s unofficial mascot.
For almost a year old, this little girl looks healthy. She is full of giggles and smiles—however, there is more than meets the eye. Story’s story is a wonderful reminder of hope. Lauren, Story’s mother, was 20 weeks pregnant when she went in for a regular checkup, where the doctor became concerned about Story’s heart. Lauren and her husband, Adam, were sent to a high-risk fetal doctor, where they learned heavy news—their baby girl had a major heart defect.
The Hill family is from Kentucky, and their doctor knew their home hospital would not be able to handle the magnitude of Story’s heart defect, so Lauren and Adam were referred to Nationwide Children’s Hospital. The couple did not know where they would stay during Story’s surgeries and treatments, so they were referred to the Columbus Ronald McDonald House, and knew this place would serve as their home-away-from-home during a scary and unknown time in their lives.
On October 23, 2013, Lauren made the trip to Columbus. Because of the magnitude of Story’s heart defect, Lauren would be giving birth at Riverside Methodist Hospital, which is known for their fantastic labor and delivery services. On October 28, 2013, Story was born and four hours after her birth, she was transferred to Nationwide Children’s Hospital. On November 1st at a mere five days old, Story had her first of three heart procedures and her heart was the size of a strawberry. She was in the hospital for 3 ½ weeks. At five months old, Story had her second surgery, which was more intensive and invasive. The little girl had a blood transfusion and her heart was stopped while she was put on bypass.
Earlier this year, Story was not taking her feedings, but Lauren and Adam were convinced it was because she was teething. Her mother took Story to a scheduled appointment, where the doctor gave devastating news: Story was having heart failure. She was immediately airlifted from Kentucky to Nationwide Children’s Hospital and admitted to the Cardiac Intensive Care Unit. On July 3, 2014, Adam and Lauren made the decision to put Story on the transplant list.
Every morning, Lauren would wake up and say to herself, “Today could be the day that my daughter gets a new heart!” Even though there were dark days, Lauren and Adam never gave up hope. On August 17th, Lauren didn’t wake up thinking about Story receiving a new heart. Adam was in Kentucky keeping insurance going when Story’s doctor gave some unexpected news: he was stopping Story’s feeds and Lauren needed to call Adam, because they had a heart for Story! “We experienced so many emotions that day—we grieved for the family that had lost their child, fear for the major surgery our daughter would endure, and elated there was a match for our sweet girl.”
The surgery went well, and Story has had some bumps in the road, but she has been staying at the Columbus Ronald McDonald House during her weekly appointments. “The Columbus Ronald McDonald House is our home-away-from-home. The volunteers and staff are our second family. We love having our suite here at the House because we can cook and spend time together as a complete family and keep our life feeling normal in abnormal circumstances. We love what a homey atmosphere this place is—the smells and sounds are familiar to our own home. With the stress of being three hours away from our home, we do not know what we would have done without RMHC of Central Ohio. This place is a gift, just like Story’s heart is a gift to us.”
Update: Today is a wonderful day to celebrate with the Hill family. After being in Columbus for more than four months, Story is heading home today! We are so glad we could provide a home-away-from-home for this young family during a season of their lives.