I have heard it said that our emotions have two sides – joy and sadness, and you can’t have one without the other. For our NF Northeast Community this has been a week of conflicting emotions, and I think it is fair to say that the sadness outweighs the joy.
The week began on Monday with the 31st Annual NF Golf Tournament at the International Golf Course in Bolton, MA. This event has been the cornerstone on which the NF Northeast organization was built. The success of this enduring and highly regarded tournament evokes feelings of joy and pride. We are proud that this high profile event has helped create awareness of NF, proud that it has raised over $3 million dollars to help fund critical research, and especially proud that golfers at the tournament have stepped up to sponsor hundreds of kids to attend Camp New Friends. The kids who go to NF Camp get to experience joy for one week, thanks to the kindness and generosity of strangers.
On Tuesday our emotional pendulum swung dramatically into sadness as we attended two funerals for two remarkable young women in our NF Northeast Family. They died because of NF1.
Brittany Roche of New Hampshire was 25 years old and Erin Dawson of Massachusetts was 29. Brittany and Erin both belonged to large families who have been very involved as volunteers for our organization and have greatly helped us further our mission. The two families have worked tirelessly to create awareness of NF and raise funds for research to find treatments and the cure for NF.
I have known both girls since they were young, and as is often the case, NF affected them very differently. Brittany had medical issues beginning at age 3, but Erin’s was considered a “mild” case of NF.
They were different personality types and had different goals, but in many ways they were on similar paths. They just wanted healthy, happy lives, but NF would not allow that.
Before she became too ill to continue college, Brittany was studying Early Childhood Education. She treasured the time with her family, and especially her three young nieces. Early on, Brittany would talk openly about NF whether it be on a video about NF or in front of a large audience at the ribbon cutting ceremony for the Harvard Medical School Center for NF and Allied Disorders. In recent years she was guest speaker at the International Golf Tournament. She told the room full of golfers how NF had impacted her life, and how wonderful it was for her to make friends at NF Camp. When Brittany finished talking golfers rose to their feet and donated enough to pay for twenty-five kids to attend Camp New Friends! Helping others is what gave Brittany joy, and when Brittany was described by her family members and friends the words courage, grace and positivity were often heard.
For Erin, getting through school took her a little longer than she planned, and it was a great accomplishment when she received her Bachelors’ degree in Criminal Justice and went on to become the first female Security Officer at Endicott College. This career was her lifelong dream but sadly her work was cut short due to illness and treatment.
Erin had a bucket list. Swimming with the dolphins, parachuting, a Taylor Swift Concert and memorable trips with family were checked off that list one by one in spite of Stage 4 cancer. At her memorial service family members had hot-pink streaks in their hair, because on any day we were never sure what color Erin’s hair would be, but hot-pink was a favorite! Her family describes her as smart, funny and lovely – a woman who was given every gift but time.
This week the words courageous and resilient were used often to describe Erin and Brittany, but on Tuesday morning in New Hampshire and Tuesday afternoon in Massachusetts it was two courageous and resilient mothers who delivered the beautiful and heartbreaking eulogies for their daughters.
We have known that Brittany and Erin have both had failing health these past few years, but the reality of their passing within days of each other has left me stunned, angry and, quite frankly, a bit defeated. They fought so hard, their families worked so hard, and still NF won in the end. NF won because we have not done enough and we still have work to do. We will take a few lessons from Erin and Brittany, and their mothers and families, and in their honor we will fight even harder to win this battle against NF.
June 17, 2016 – by Karen Peluso, Executive Director, Neurofibromatosis Northeast