Laura
Propionic Acidemia
January 12, 1989 – May 6, 2025
Laura was born on January 12, 1989, and from the start she was ready to confront life on her own level. After being sick during the first five weeks of life, Laura went to Tufts Medical Center on February 23, 1989, where she was eventually diagnosed with Propionic Acidemia. At that time, there were only about 40 cases of PA in the United States. From that point on, life was full of challenges, education, and joy. Laura was an outgoing, social person from the start of her life whether it was at home, in school, or in the hospital. Even as a toddler in a shopping cart in the supermarket she would speak to the next person in line. “Hi, I’m Laura and this is Ed.” I would quickly add, “Also known as Dad!” Despite the many challenges that came her way, Laura was always reaching out to other people, making friends wherever she went. It would take volumes to cover the details of Laura’s 36-year life, but I will try to cover some of the highlights that made Laura’s life so special.
When Laura was five years old, she was admitted to the Floating Hospital in Tufts. Her older brother, Rob, was in kindergarten when she was admitted and was already in first grade when she finally was discharged. So little was known about treating Propionic Acidemia at that time, so various attempts to stabilize her may have actually prolonged her stay. So much would be learned in the next 31 years and Laura’s life would alter treatment of PA for the better. That hospital stay included our first admission to the Intensive Care Unit (ICU) since she was diagnosed in the PICU at five weeks of age.
Laura’s medical journey included several medical institutions in three different states. She had many stays of various lengths in the Elliot Hospital in Manchester, Tufts Medical Center, Boston Children’s Hospital, Brigham and Women’s Hospital, and Massachusetts General Hospital all in Boston. Laura also spent time in the National Institutes of Health (NIH) in Bethesda, MD in both 2017 and 2019 as part of their study of Methylmalonic Acidemia and Propionic Acidemia. No matter where Laura was treated, she encountered so many incredible nurses and doctors who helped her deal with the many issues that she had to face. At the same time Laura made such an impression of all of them. In fact, her pediatricians as well as medical personnel from MGH who had only treated her during her final hospitalization came to her service.
Besides Propionic Acidemia, Laura developed epilepsy at age 14. Seizures and our attempts to keep them under control would be a factor in what Laura could do and what she could enjoy. There were cardiac issues (Atrial Flutter) that developed, including one Code Blue call when she was in the Elliot. Later in life, her kidneys began to fail. On March 15, 2024, Laura started dialysis which continued for 13 ½ months until she passed away.
Even though medical issues were a major part of Laura’s life they were not what only defined her. As I mentioned earlier, Laura was very outgoing, truly enjoying meeting new people and spending time with those who would remain close friends for life. When Laura’s spirit got a hold of you, you would never escape, and you would never want to do so. Laura was involved in so many activities along the way. She played baseball in the Challenger Sports division of Little League and later made the transition to softball, bowling, basketball, and volleyball with Challenger Sports, Inc. Laura participated in Special Olympics earning medals and ribbons in track and field, bowling, and equestrian. Laura rode horses for therapy and later drove a horse cart over a thirty-year period with UpReach Therapeutic Equestrian Center. The horses were part of her love for animals, especially the greyhounds we had at different points in her life and her brother’s current dog, Daisy. Laura was active in day programs, the Moore Center, and Community Integrated Services, after receiving her diploma from Manchester Memorial High School. She was also active in art classes in the Currier Museum in Manchester, NH.
Another side of Laura’s life was as Coach Laura. She coached basketball and softball with her dad at The Derryfield School for decades. She became such a positive influence on so many young women who passed through these programs. Laura’s participation as coach was good for both her and her athletes. Her determination, her courage, her joy, and her love of life showed them that despite challenges and limitations, life can be enjoyed and shared. The school so appreciated Coach Laura’s life at Derryfield that this coming basketball season they will dedicate a special coach’s chair in her memory that will always be with the bench for the players.
Laura’s newest role over her final years was as Auntie Laura to her nephew, Asher. Laura truly loved her family which included grandparents, Mom & Dad, brother Rob and sister-in-law Nicole, many aunts and uncles, and cousins. She had so much joy seeing them, especially her godparents, whether at a family event or when they came to visit her in the hospital.
Laura loved an adventure. Despite having to make special accommodations, she was able to visit Disneyland and relatives in California. When Dad was on spring break, the family would travel to Florida to spend time at Disney World and to visit friends who had relocated to the Sunshine state. Our yearly summer vacation in Wells, Maine was spent building rock towers and playing sports on the beach. Daily trips to the arcade were required. Of course, time was spent with even more friends. On Laura’s two visits to NIH, she was able to visit Washington, DC going to the Smithsonian, the World War II Memorial to honor Papa Lemire, and several other monuments.
If there were any doubt that Laura had a tremendous effect on the world around her, the outpouring of love to honor her life once she passed was amazing. The funeral home stated that it may have been the biggest wake and service that they ever had. Well more than one thousand people reached out to the family to express love, honor, and condolences. Sixty-six donations totaling almost $5,300 were made to the OAA in her name. So many wonderful stories of Laura and her positive contributions to all despite her challenges have been and continue to be shared. Friends visit her final resting place daily to say prayers and make sure her flowers are watered. To quote Big Dave from the supermarket, “she will be missed, but never forgotten.”
Rest in peace, Laura. Your incredible smile and bear-like hugs will always be remembered.
