These are the moments – These are the Times – Let’s Make the Best Out Of Our Lives
I often think of these lyrics as the last words Laura Linehan spoke to me. Standing at Mt Auburn Cemetery surrounded by her friends, her family, and everyone that loved her, the song played as we said goodbye. It was a specific request that if she wasn’t to survive this battle she had been fighting for so long, to play the song at her funeral.
In 2005 I decided I wanted to run another Boston Marathon but had no idea how I would score a number like I did two years before, by luck. A friend told me to call the American Liver Foundation to see if they had entries. I completed the application and sent it in, then emailed, and then called and called again until finally they agreed to offer me a space on the Run for Research team. I would be responsible for raising a minimum of $2500 for ALF which seemed daunting but manageable. I planned to send letters and emails to friends and family asking for their support. I attended team meetings to learn more about liver disease – I knew very little and, like many people do, simply associated liver disease with alcoholism.
|Laura gets ready for Prom with her parents, Ann and Jim
I decided to sign up for the Patient Match Program which introduced me to the Morea family from NY. I found their story incredibly inspiring and started to take more interest in the cause I was running and raising funds for. Then, I received a call from my mother. She had mentioned to family friend, Mary Brotherton, that I would be running for ALF and Mary shared that her niece had liver disease. Mary suggested I talk to her sister about their experiences. A couple of months later I received a call from Ann Linehan… and my life was never the same again.
Laura Linehan was born with tyrosinemia, a rare disorder that prevents the body from breaking down an amino acid which then builds to dangerous levels, possibly leading to liver and kidney failure. At two years old, Laura received what was thought to be a life saving liver transplant. She lived the normal life of a little girl until a registered letter arrived from Children’s Hospital. A blood transfusion she received during the transplant was infected with hepatitis C and she had to be tested. Laura, a fifth grader at the time, tested positive for hepatitis C. She began treatments to fight the virus but they proved to be unsuccessful and her transplanted liver was destroyed.
In 2005 when I met Laura for the first time she was like any high school student. She talked about her friends, fashion and the upcoming prom. The Linehan family offered to get involved with my fundraising campaign and reached out to their friends and loved ones to contribute. The Linehans and I raised $5500 that year and I was incredibly proud to run the marathon in honor of her fight. I crossed the finish line of the race but felt compelled to continue my work for ALF. A few months later I accepted a position at ALF as the coordinator of the marathon team and continued running Boston with RFR for the next six years.
It felt great to be able to share with Laura all of the things we were doing to help fight liver disease. She once sent me an email after a pre marathon dinner where she told me how amazing it was to see all of those people working to help her and everyone affected by liver disease. I used to bring her t-shirts and silly giveaways from ALF in the hospital. A postcard I gave her that said ‘Livers Are Cool’ always hung on the wall of her hospital room. It was even rescued when one of the rooms flooded! I was glad to offer a bit of comic relief even when things were tough.
|Laura with Jenna Atturio
In the fall of 2006, Laura was listed for a second liver transplant. Within that time she fell in and out of the right MELD score to be active on the list and one of her best friends, Jenna Atturio, passed away. Jenna was also waiting for a liver transplant. In 2008, Ann and Laura packed up and moved to Jacksonville Florida. The Mayo Clinic in Jacksonville did significantly more liver transplants than here in New England and the chances of her receiving a new liver in time would be much greater there. Leaving their family, friends and support system behind, they moved south with hopes that it would save her life. Daily reports were published on CaringBridge to keep us all up to date on how she was doing, the new friends they were meeting and the efforts made to make Jacksonville a home away from home.
Laura’s health was declining but we never gave up hope and kept praying that she would receive her transplant. Ann and her husband Jim even appeared on a local news station in Jacksonville pleading for help. Then, on Friday April 4 all of our prayers seemed answered when a liver became available. Laura when into the O.R. at 8:00 am and we all held our breath. I remember so clearly that the American Liver Foundation Gala was that evening and my friend Dr. Doug Horst spoke at the event. He talked about Laura and how she was receiving her transplant that day. Although busy at the gala, my phone never left my sight desperately waiting to get the call that the transplant went well and Laura would be okay. That call never came. The next morning my phone rang and I knew immediately who it was. Ann wanted me to hear from her that Laura passed away the night before. She was too sick to survive the surgery and her poor body simply couldn’t take anymore. I sobbed while Ann thanked me for everything I had done for Laura and assured me that she was in a better place, no longer in pain. I swore to Ann that morning that I wasn’t done; I would keep working and fighting for Laura every way I knew how. Two weeks later I ran the Boston Marathon, this time in memory of Laura. The Boston Globe even ran a story on my run for her called Legacies of Endurance. I was interviewed for that article moments after stumbling into the Westin after finishing the race. I’m so thankful Adrian Walker found some good quotes in my delirious ramblings.
|Running the 2008 Boston Marathon for Laura
It’s been over four years since we lost Laura. I think of her every day and her story inspires me to do the best work I can at New England Organ Bank. Her family remains active with the Liver Foundation and with NEOB doing volunteer work. They share their story encouraging others to be registered organ donors. She may be gone but our fight continues.
Today, September 11, would have been Laura’s 25th birthday. Ironically, it’s a day they we associate with destruction and terror since the 2001 attacks, but for those of us who knew and loved Laura Linehan, today belongs to a special young woman. A woman who was able to focus on the positive and find the light in even the worst of scenarios. She laughed a lot and lived her short life to the fullest. In her honor, I will continue each day to try and do the same. If you are not currently a registered organ donor please visit www.DonateLifeNewEngland.org to educate yourself about donation and sign up to potentially save lives.
Cause these are the days worth living
These are the years we’re given
And these are the moments
These are the times
Let’s make the best out of our lives
In loving memory of Laura Christine Linehan
September 11, 1987 – April 4, 2008