by Mikela St. John
Hi! I’m Mikela. I’m 17, a senior in high school, an actor, a Girl Scout, and I have VActerL.
What is VACTERL? It is a rare association of birth defects that affects 1.6 out of every 10,000 live births. VACTERL is an acronym: V for vertebrae; A for anorectal malformation; C for cardiac; TE for tracheoesophageal; R for renal; L for limb. In order to have VACTERL, you have to have three of the six types of birth defects. I have three of the six — V, A, and L.
I’ve been given the opportunity to write quite a few papers in school about VACTERL. I learned a lot about the science behind VACTERL, and it frustrated me that there was so little research. It saddened me that people had to explain what VACTERL was to their new doctor. Frankly, it scared me. I’m going to college in a few months, and I’m going to have to find a new doctor and deal with VACTERL and all its implications with a lot less help than I’ve had. I knew then that I wanted to do something to raise awareness for VACTERL.
Girl Scouts gave me a great opportunity to do just that through the Gold Award, which is similar to becoming an Eagle Scout (if you’re familiar with Boy Scouts), but the Girl Scout project is much, much harder.
I originally planned to make my Gold Award project about raising support and awareness for VACTERL. After receiving some pushback from Girl Scouts, I widened the scope of my project to raising support and awareness for rare disorders, with a focus on VACTERL.
My project has five parts to it: 1) organizing San Jose’s First Annual Walk for Rare Diseases (and ensure it is an annual walk), 2) creating a VACTERL user-friendly website to be used by patients and hospitals, 3) creating a patch program for Girl Scouts, so they can learn more about rare diseases, 4) creating an ambassador program of people with VACTERL to reach out to people and continue the work of the project, and 5) creating a good news book to donate to hospitals.
As of this writing, I have completed the first part of my project. San Jose’s First Annual Walk for Rare Diseases took place on March 2, 2019. I had 150 people signed up to be there (either through registration or volunteers), a sponsorship from Soleno Therapeutics (who made it possible to have T-shirts), six exhibitors, and a food truck. Unfortunately, it rained the day of the walk, but we still had at least 120 people there. People were so excited to walk and show support for rare diseases. I felt incredibly supported.
I was able to get Councilmember Johnny Khamis (San Jose, District 10) to come and speak, and he gave me a certificate of appreciation for organizing the walk. Zoe Lofgren (D-Calif.) had someone from her office come to give me an official recognition for San Jose’s First Annual Walk for Rare Diseases. The people I talked with were all excited to be there and see someone trying to raise awareness for rare diseases.
Now that the walk is over, I am directing my energy to finishing the rest of my Gold Award project. If you’re interested, follow @sjrarediseases on Facebook, Instagram, and Twitter. I am going to Hillsdale College in Michigan, and I plan on majoring in politics and going to law school after I earn my BA. I want to do more in college with raising support and awareness for rare diseases, and I am grateful to have gotten so much support so early in my journey.
If you’re in the Bay Area, I hope to see you at San Jose’s Second Annual Walk for Rare Diseases! Happy belated rare disease day, and I hope you are all showing your rare.