Nevus Outreach 2016 Winter Newsletter
Celebrate: The doctors, the conferences, the families…
Making new friends at the 2016 Conference
As Nevus Outreach approaches its 20-year anniversary, we can cite numerous milestones and achievements…all worthy of praise. I will focus on the major standouts from my perspective as a board member, mother to a child with a giant nevus, and as a “family” member of the Nevus Family.
For decades, and even as recently as the early 2000’s, families were often confronted with a dire diagnosis from doctors (citing poor research) that our beloved children with nevi should be taken home and loved unconditionally as they would likely die by the time they reached 2-5 years of age. A frightful prospect most families, and over time, learned to be untrue. Sadly, it set the stage of a guarded and somewhat overly protective life for many.
The Internet changed all that. Nevus Outreach was founded in 1997 by three families who discovered each other via the then neophyte Internet…who started to connect the dots, so to speak.
Fast forward to the spring of 2016…a doctor called me. She informed me she was caring for a newborn, only a few days old, with a bathing trunk nevus. This doctor passed to me the contact information for the parents of this precious little boy so our family could reach out to them and offer support. Think about that. Now a doctor is connecting families with nevus members as soon as a baby is born! The once dire diagnosis of this rare condition was turning into an avenue to join a huge, supportive and loving nevus family.
Then it happened again, just last night, (7 Nov 2016). The same doctor called me to let me know a new family had moved into our state from overseas. They had a young son with a nevus who would benefit from the support of others who have already traveled the road of stares, boosting self-esteem, and dealing with issues in elementary school. Our family is growing strong and supportive with the incredible help of this pediatric dermatologist who is actively working to connect families with Congenital Melanocytic Nevi (CMN).
Second is the conference - Nevus Outreach’s flagship event happens every two years. For new parents or adults who recently found Nevus Outreach, the scientific presentations offer answers and studies to explain what and why children are born with this condition. While the science is amazing and informative for the intellectual hunger, the heart is fed by connecting and being with others who share a similar story and travel the same journey. The emotional support of bonding with others is what sets Nevus Outreach conferences apart. They build us up and offer hope when we’ve despaired, offer family when we’ve felt alone, offer smiles when we’ve dealt with frowns, offer hugs when we’ve dealt with stares, offered tears of joy when we’ve shed enough tears of sadness. There is unconditional love between new families, beauty beyond the surface, and finding our “skin twin”. We recognize we can lead productive and astoundingly successful lives, flourishing in the skin with which we were born and reveling in the beauty and uniqueness of who were are.
And lastly, the families. You are incredibly generous, loving and supportive. You make Nevus Outreach what it is today. You love, you laugh, and you cry. When we lose a precious soul to this sometimes insidious condition, we all lose a piece of ourselves and hug our family members tighter. We pray, we console, we remember. And we celebrate - we celebrate this wonderful, glorious life with nevus.
Celebrating every day from the Last Frontier,