How I met Drew and the three types of neurofibromatosis
The three types of neurofibromatosis are NF1, NF2, and NF3. Normally NF1 is diagnosed during childhood while NF2 and NF3 are diagnosed in adulthood. Unfortunately for my friend Drew, he was diagnosed with NF3 which is also called schwannomatosis a few weeks before his sixteenth birthday and it’s the worst kind of NF that a person can have. When I was eight or nine years old and probably in 3rd grade in elementary school of 2008, I met Drew for the first time because his mom was one of the media specialists at the elementary school that Drew and I both went to and we became friends. My elementary school had a field day in late May of 2009 and I knew my dad was coming, but it was a happy surprise to see Drew as well. I wasn’t expecting it to happen, but my favorite field day memory with my dad and Drew was the water balloon toss activity. I don’t remember exactly if it was either my dad or Drew who told me to get between the two of them without me knowing that they were holding a water balloon above my head and I believe that they claimed to have “accidentally” dropped the water balloon on my head which obviously resulted in me getting soaking wet on purpose while dad and Drew laughed about it.
Drew's fight with NF until I found out that he passed away
After I became friends with Drew in elementary school and stayed connected with him while I was in middle school as well as the first two years, I signed up to receive journal updates on his condition via text message from his CaringBridge page. I remember while I was in middle school during Drew’s fight with NF, he’d fly from John Hopkins Hospital in Baltimore, Maryland for surgery to the Shepherd Center in Atlanta, Georgia for recovery and rehabilitation and I’d go visit him whenever possible while he was there. Drew fought cancer twice but unfortunately could only defeat it once. Sadly, Drew ended up passing away from both neurofibromatosis and cancer on August 24th, 2015 at the age of twenty-eight years old when I was sixteen years old and I ended up being emotionally crushed when I found out two days later.
Cupid's Undie Run organization
In my opinion, neurofibromatosis is a God-awful incurable disease, and Drew was definitely a fighter because he fought through everything he possibly could until the day he died. Thankfully back in 2010, Drew was the inspiration behind an organization called Cupid’s Undie Run where participants in 39 out of the 50 states in the USA run a mile in their underwear to raise money because unfortunately NF fighters can’t cover up their scars and tumors and thanks to that happening, $21,700,000 to date has been raised and 100% of it goes towards hopefully and eventually finding a cure for neurofibromatosis someday. Back in May of 2018, Cupid’s did a contest on social media and if I remember correctly, the participants were supposed to post about NF Awareness on social media which is the 6th picture, and were entered into a raffle to win a cupid t-shirt, a pair of cupid socks, and a pair of cupid sunglasses which I’m pictured wearing in the 7th picture because I was one of the two winners for the raffle contest.
Raising awareness for neurofibromatosis
The Youtube video attached was made by Drew’s mom and older brother Ben (who wrote and performed the song that's playing in the video) back in November of 2014 which explains Drew’s condition from the very beginning and as you can see in a few of the pictures, Drew went from being able to walk to being in a wheelchair, due to neurofibromatosis and cancer because one of the things that come with neurofibromatosis specifically in Drew's case is paralysis. I’m hoping this story brings awareness to a disease that unfortunately, certain unlucky people are having to deal with and dying from because there’s currently no cure for it. I miss you every day Drew and this story is my way of honoring you and every other new, current, or deceased NF fighter and hero. If you want to learn more about Cupid's Charity or neurofibromatosis in general, go to cupids.org or follow them on social media at @cupidsundierun or @childrenstumor #ENDNF #ImWithDrew #DoItForDrew