*Article appeared in our 3rd Quarter 2012 Newsletter.
The week before our trip to Indianapolis to represent the new Clinical Partnership between Lineagen and the 4p- Support Group, I was apprehensive. Megan, Rena and I had filled our days with final preparations by reviewing 4p- Biographical Forms and pouring through countless stories, photos and videos posted online by families from the 4p- Support Group. Before reading the stories I had been excited about our trip. I knew we were bringing a valuable medical service to the families at the conference and was excited to meet all the kids in person. But after reading page after page of negative experiences these families had with the medical community, I began to get a sinking feeling in my gut. What were these families going to think of us? They have had so many negative encounters with the medical profession; will they be wary of us or on the defensive? Will they think we are sticking our nose in where it doesn’t belong? Who am I to think that I can talk to these parents about a condition that I have no experience with, and they live with each day?In retrospect, my apprehensions and questions couldn’t have been farther from the truth. From the moment we arrived, we were overwhelmed with the enthusiasm, openness and support that all the families showered upon us. We talked, we laughed, we cried, we played, we hugged and we learned. We not only learned about 4p- conditions, we learned about the beauty of the human spirit and human resilience. I can already see the effects of that weekend on my attitudes and actions as a genetic counselor: I am more compassionate and I seek the positives in a diagnosis rather than the negatives. So to all the families who were at the conference, I want to say thank you. Thank you for sharing your stories, your kids and your acceptance. Thank you for being wonderful parents, grandparents, siblings and relatives who always strive to give the best care possible to your children. Thank you for not accepting “no” for an answer and for teaching the medical community about what a diagnosis of 4p- really means.
Since Indy….Since returning to Utah, we have sought out ways to share our experience at the 4p- Support Group Conference with our colleagues at Lineagen and the broader medical community. We are in process of submitting a webinar that will be available to genetic counselors across the country and have been brainstorming ways we can formally raise awareness for 4p-/Wolf-Hirschhorn syndrome and the many accomplishments and positive aspects that come with it. In the meantime, we take every opportunity we have to share with our colleagues, friends and neighbors about the wonderful families we met in Indianapolis.When genetic counselors hear a diagnosis, we often call to mind an image of the chromosome, the deletion, and the genetic features….mostly academic things. Now, when we hear the term “4p-“, we think of the unbreakable bonds between these brothers and sisters, the strength and unconditional love of their parents, and the endless amounts of faith, hope, and happiness that fill these kiddos’ hearts.
Our lives are forever changed!
We dance for you,
Rena, Megan, & Mallory