There are many ways parents who have lost a child choose to honor their loved one.  I have chosen to run the 2025 Boston Marathon by joining the Boston Children's Hospital "Miles for Miracles Team" on April 21st.  I will be running in memory of our beloved daughter, Molly.

Molly was born in 1988 and diagnosed shortly after birth with Cornelia de Lange Syndrome.  CdLS is a rare and complicated genetic disorder that can result in variety of physical, medical and developmental affects ranging from mild to profound.  Molly was on the severe end of the CdLS spectrum but lived a rich life surrounded by love.

Molly was with us for 30 years and passed away at Boston Children's Hospital 6 years ago.  Thankfully, her BCH medical team understood that although Molly was an adult during much of her care, she needed to continue to have her complex medical needs met at a pediatric hospital. She was, after all, the size of a young child as an adult.  We were fortunate that we lived close enough to make the trip to Boston with her countless times over the years.

Molly's medical issues became increasingly complex as she aged.  In the fall of 2018 she was in a life or death medical crisis due to bowel disease.  After her stint in the ICU for weeks we knew we needed more support.

We found that support from the Pediatric Advanced Care Team (PACT) at BCH.  The team consists of physicians, nurse practitioners, and social workers.  We met with PACT shortly after Molly came home in fragile condition from her ICU stay.  We did not realize that we would be in desperate need for their help in just a few weeks.

The PACT provides an extra layer of support by way of palliative care of the patients with serious illness such as cancer, heart disease, genetic or metabolic conditions and prematurity.  The PACT helps optimize pain management, advocates for family and health care provider education, coordinates care and helps guide families to make the best health care decisions during stressful times.  They keep the lines of communication open between families and their medical teams so you have the information needed to make challenging decisions.  Many times they follow a patient and family for decades.  Some people are confused about the difference between palliative care and hospice care.  The two are different and the PACT handles hospice assistance as one of the many services they offer.  The PACT also provides grief support for families whose children die while under the care of BCH.

Molly's bowel issues returned in the winter of 2019 and she was transported to BCH.  It became clear after many painful discussions that we had exhausted all reasonable options for Molly's treatment.  The PACT then moved into hospice mode for her final days at Boston Children's Hospital.

The kindness and compassion showed to our family during this sad and challenging time will never be forgotten.  I am the only runner on the 2025 Miles of Miracles Team raising funds dedicated to the Pediatric Advanced Care Team.  While Kathy and I hope families will never need these services, the fact is many will.  Boston Children's Hospital treats children not just from New England but from all over the world.  Will you help us help the Pediatric Advanced Care Team help these families?

Thank you so much for caring and helping us honor Molly's life.