I am running again! This time I will be running for Boston Children's Hospital and the Miles for Miracle Team in the New York City Marathon this year! I am running on behalf of my twin step-sons, Nolan and Nicholas.
My wife Sabrina’s journey began at Boston Children’s Hospital when she was pregnant with Nicholas and Nolan. Due to complications, she became a patient at the Maternal Fetal Medicine Center. She was monitored frequently, up to three times a week. After delivering the boys, they were diagnosed with Alagille Syndrome. A rare disease that disrupts organ development. Unfortunately, both boys were affected; however, Nolan would ultimately need a liver transplant. At 5 months of age, a G-tube was placed after a week long hospital stay. At this time, Nolan only weighed 8 pounds, 8 ounces. He was diagnosed with failure to thrive and admitted. After months of tube feeds, a more permanent tube was placed in his abdomen. At the same time, Nicholas and Nolan were also receiving various types of therapy through BCH and other therapy centers. Their development was delayed. Sabrina took a leave from work in their first year of life to care for them. They had service providers in and out of the home, even having a nurse visit daily. Sabrina was determined to help Nolan in his fight.
After spending many weeks in and out of BCH, the decision was made to list Nolan for a liver transplant. Many months were spent discussing all of Nolan's options, but ultimately a liver transplant was his life-saving option. After months of discussion with the liver team, Nolan was to be listed for his organ on May 26, 2015; however, days before this Nolan fell down a full flight of stairs. He was airlifted to BCH where he underwent emergency brain surgery for a brain bleed. Due to the skilled neurosurgeon on call that night, Nolan came through surgery without any permanent damage to his brain. But he had to wait. Due to the nature of his brain injury Nolan was not able to be listed for his life saving transplant until July 2015. He continued to recover from his fall and was even able to return to school with some restrictions and close guard.
On February 4, 2016 they received the most amazing phone call – Nolan would receive his transplant. A split liver transplant from a deceased donor. While my wife was excited for Nolan, the donor's family was in her thoughts and prayers. On February 5, Nolan received his liver transplant. After the 10+ hours of surgery, Nolan again showed his strength. He remained at BCH for a month+ post transplant due to some complications. Life was then getting back to normal and Nolan was feeling great even. My wife remembers him saying clearly, "Momma, I have more energy and I don't hurt anymore!" These are the words she longed to hear for so many years. However, their lives were changed again in July 2016. Nolan was hospitalized, again, and diagnosed with a form of lymphoma. Sabrina was devastated.
Nolan spent another month in the hospital undergoing Chemotherapy. His treatment continued at Dana Farber/Jimmy Fund Clinic and BCH where he was monitored by the best. In this time, Nolan underwent several biopsy procedures, lumbar punctures, and other surgeries. Luckily, Nolan responded well to his treatment, kept a positive attitude, and appreciated life in a way children shouldn't have to. He struggled most days but he didn't want to show it. He fought. He won daily victories more than not! He continues to see his team at BCH; however, Nolan is now strong enough to play hockey!
Nolan’s story, our story, and our experience with Miles for Miracles has led me to make this commitment to run the New York City Marathon 2024. To raise even more money for BCH. I was able to raise over $9,000 while training for the Boston Marathon in 2023. My fundraising goal for the NYC Marathon is $4,500! Please join me in helping to raise money for the children who continue to fight for their lives at BCH.
