I located a new campaign for awareness that NORD started, The 7000 Mile Rare Movement. I discovered this about a month ago and volleyed back and forth in my mind whether or not I’d get involved, with some prompting I took at chance, created an online campaign and sent an email off to NORD and asked how I could help more and, also, that I was interested in working with their Running 4 Rare teams. (That is a story for another day). I was a PKU adult, returned to treatment, pageant Queen and Advocate.
On Friday Jan. 26th I had a 30 min. phone call with Ross (who has the most pleasant to die for English accent), and within that short time he asked if I would be willing to share my story & my PKU life with the public and become one of their National spokespersons for the 7000 Mile Rare Movement. I took myself by surprise that without a minute pause I said “yes”. Now, this may not seem like a huge leap for many, but a decision like this would’ve a few years ago or even one year ago taken much soul searching and contemplation, heck 6 years ago I could hardly form my thoughts into words and make them come out. This, however, is what 2017 and my fight to regain control of my PKU life had been leading me up to. How could I say no? I didn’t even consult my husband before my response.
The 2018 Miss Plus America theme has been echoing in my head “The Year of Influence.” along with stories upon stories of PKU patients losing their medical coverage for their treatments on a national scale. This was once mainly the blight of PKU adults but has now trickled down to children. I took up my crown to speak for the those that felt so out-numbered that they would never be heard and those numbers grow daily, not just in the US, but WORLDWIDE.
PKU is for the most part an invisible illness, we don’t look any different than the person sitting next to us and we get a lot of “oh, it’s just a diet. It’s not THAT bad.” Oh, bless your heart, you poor soul, if you only knew and how do you get people to understand. Honestly, if anyone has had the chance to see news coverage about PKU it has been mostly parents pleading for their kids, but FACT: KIDS GROW UP we don’t just fall off the face of the Earth.
When I accepted this undertaking I didn’t know how fast the ball when get running. Ross got me in touch with Laura by the end of Friday and by like Monday I got an email from Leah with their PR firm. We had a 45 min call and I had to explain PKU & my life in a nutshell, which is no small feet. That got me to thinking, even kinda second guessing my decision (how much do I share? who wants to hear my story?), but I adapt and overcome and press onward. By Thursday I was sending Leah my bullet points and a brief about me and my life. So, here is the snapshot of what I’ve been doing the last few days, where it goes from here I’m not sure, but hold on to your crowns my Kings & Queens life is about to get interesting for PKU & this Rare Jewel.
Here is a brief exert from what I shared with Leah about my PKU, my life , the pageant and my purpose:
“About 6 years ago was my rock bottom PKU wise. We learned my father-in-law had ALS. The rock that my husband was so swept out from under me. I could no longer maintain the appearance of normalcy. I had a severe studder, I could hardly walk, stairs were a no, I had words trapped that wouldn’t come out. I ended up in the hospital, neuro unit, were he was told, your wife will never be the same, she is mildly mentally impaired she shouldn’t drive, won’t be able to work. She will most likely get worse and at some point she will need a group home or institution. The damage is done & is not going to get better. Then I learned of the Peg-Pal trials, which I have now been a part of for almost 4 years ( I cannot discuss much of this due to the FDA trails)
Throughout this time I would read stories and connect with PKU adults and families over Facebook. All these had 1 main overtone, they were all discouraged, felt ignored, forced into the shadows (PKU adults especially felt this way), and forgotten. Cursed is a word that many touched by PKU use. Oh, the power that word has when you speak into existence. I knew that feeling and that power. We knew I had to do something, connect with these people, give them a voice. Not just one that was roses and rainbows, but the reality.