Our family's journey began at BCH when I was pregnant with Nicholas and Nolan. Due to complications, I became a patient at the Maternal Fetal Medicine Center. I 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 seemed to have received the worst of the symptoms. At 5 months of age, a G-tube was placed after he was diagnosed with failure to thrive. At this time, Nolan only weighed 8 pounds, 8 ounces. 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. I took a leave from work in their first year of life to care for them in the way that they needed. We had service providers in and out of our home at some points even having a nurse visit us daily. Tim and I were 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. Tim and I spent months discussing all options, but ultimately 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, our family experienced one of the most traumatic events.
On May 23, days before his listing date, 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 we 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 we received the most amazing phone call - Nolan would receive his transplant. A split liver transplant from a deceased donor. While I was excited for Nolan, the donor's family was in my thoughts and prayers. On February 5, Nolan received his liver transplant.(And, we celebrate each year with a "Liverversary"..it's a date as important as a birthday or anniversary) Tim and I found comfort in each other during the 15+ hours of surgery. Nolan again showed his strength throughout. We 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. I remember him saying, "Momma, I have more energy and I don't hurt anymore!" These are the words I longed to hear for so many years. However, our lives were changed again in July 2016. Nolan was hospitalized, again, and diagnosed with a form of lymphoma. Our family 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 biopsies, lumbar punctures, and other surgeries. As a result of chemotherapy treatment, Nolan lost his hearing and wears hearing aids. He also developed fluid on his optic nerve resulting in some vision loss. Luckily, Nolan responded well to his treatment, kept a positive attitude, and appreciated life in way children shouldn't have to. He struggled most days, but he didn't want to show it. We fought. He fought. He won daily victories more than not, everyday fighting. He got better.
Later that next year Nolan was asked by one of his favorite nurses to be her patient partner for the BCH Miles for Miracles Marathon team. It was one of the best experiences of our lives. Nolan was nominated and was awarded with their highest award known as the Katie Lynch award for his positive spirit and commitment to others. He is so deserving!
Nolan's story, our story, my story and our experience with Miles for Miracles has led me to make this commitment to run the Boston Marathon in 2019. To raise money for BCH. To help. I can't wait to meet my family at the finish line! To see Nolan's smile. Thank you for all your love and support over the years.
If you are able, please make a donation in order to support Boston Children's Hospital.
Lots of love,