Help Little Princes and Princesses affected by Huntington's Disease attend National Youth Alliance conference June 2019! https://nya.hdsa.org/
I know what you're thinking: This girl looks a little different. Lemme guess: It's the hair, isn't it?
Okay, chances are you might'venoticed the unusual discolorations on my body, too. (I swear I’m not an undercover giraffe. Granted, that seems like just the sort of thing an undercover giraffe would say, but bygones.)
I'll bite: What's Huntington's Disease? What's with the large birthmarks? And what's with the whole princess getup, anyway? It's not Halloween.
I was born with two conditions that set me apart from the world at large. One of which is known (or not very well-known, as it were) as Huntington's Disease, or Huntington's chorea.
HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person's physical and mental abilities during their prime working years and has no cure. My mother died of the disease last Spring. I tested HD positive January 2018.
And honestly? I was at peace with the positive results. I think by that point in my life I decided to take a page out of Breaking Bad's Walter White's book. (Uh, the ending fear after terminal illness diagnosis part, not the, Here's My Cue To Become Kingpin of a Global Methamphetamine Empire part, mind you.)
What provided me with a tremendous amount of hope and solace last year was getting involved with the National Youth Association (NYA.) This is the youth chapter associated with Huntington's Disease Society of America.
These are folks whom turned pain into kindness, and accepted me so graciously despite the fact that I (I honest to God can't make this stuff up) share another rare condition (luck of the genetic draw, amirite?) that makes me look like a bit of an odd duck. This is known as giant congenital melanocytic nevus. (And why yes, that is a thing.) https://www.nevus.org/what-is-a-large-cmn
For us in the NYA, having the means to attend the national convention experience each year is a dream come true. This fundraiser-also known as the Polkadot Princess Project-is my NYA love note.
Why is convention so important?
Because HD is not a commonly understood or accepted condition, having this illness can be cause for a substantial amount of isolation and loneliness for youth. When everyone comes together at convention however, the ball is on! We learn to celebrate the lives of those whom have come before us, and grieve instead of despair.
And while these arguably small things we find at convention that we later turn over in our minds and hands might ultimately sound trite in the face of the reality of a disease that breaks into every last part of you, every tiny little fracture—I’d argue that these experiences are something like Cinderella’s surviving glass slipper after midnight. Even when the glow of the event and community have faded, if something lovely (even though arguably delicate) remains of those memories at the ultimate stage 5 of the disease (End of life), it can make all the difference in the world.
Heck, I'll take a short time at the ball as opposed to there being none at all.
The Princess Project(And How You Can Help)
As a National Youth Regional Lead, assisting youth from low-income households attend convention is my priority! To that end, I'm willing to try something I'd normally smoothly mamba away from, before promptly breaking for the hills:
I'll be completing a photo shoot of a different Disney princess each month this year! (They'll be available on my blog shortly after I get the silly thing back up and running again.)
In exchange, I ask patrons to assist me in to reach our goal of raising $1,000 in youth scholarship funds. (All proceeds from this GoFundMe are automatically directed to HDSA.)
I know $1,000 seems like an awful lot to ask for, but the hope I'm holding closest to my heart this year is that NYA's tradition be passed down to other youth whom might also have at one point felt alone in the world. If we can fund a scholarship to send one youth to the June 2019 conference, I do absolutely believe it can help their own inner royal, polka-dots notwithstanding.