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March 2, 2015

Kelly’s Smile: A Crohn’s Disease Fighter who Needs our Help.

Kelly

I met my wife when I was five years old.

She was a rambunctious little girl, running up and down the aisles of the bus, jumping over seats. Over the years of elementary and middle school, I watched her on the bus, crying over first puppy loves, laughing with her friends. Now, over 20 years later, I get to experience her passion every day.

Obviously, her passion has changed over the years from when we were kids; when you see my wife teach a class of high school students, her overwhelming drive and emotion for sharing great pieces of literature with her students is unmistakable. Little did I know back at five years old with my straight-legged jeans and turtleneck, that little girl ended up being my soul mate.

Whenever someone encounters Kelly, the first thing that they are drawn to is the way that her smile can brighten up a room, and her infectious laugh. Her kindness can be observed in every interaction she is a part of—she’s made it her life’s mission to leave every person she encounters feeling better than they did before—and she succeeds at it.

Not only is she as kind as she is, she’s a fighter for justice—she has spent the last two years fighting for a better education system for Hawaii’s public school students.

When Kelly isn’t in the classroom in the last couple of years, she was constantly on the go—attending meetings with other teachers to work on education policy and meeting with legislators, and researching how the public school system can benefit from private school partnerships to improve teacher retention and satisfaction, as well as putting student learning at the center of every policy (which she worked to do as a member of the education policy organization, Learning First).

Speaking of putting things first, Kelly has put everyone and everything first for as long as I’ve known her.

When she was 13 years old, things took a major turn for Kelly.

She was diagnosed with Crohn’s disease and Seronegative Enteropathic Arthritis. Over the course of the last 13 years, she has taken every medication under the sun approved for these conditions, all of which have terrible side effects and detrimental long-term possibilities. The medications used for these diseases are called “TNF Inhibitors,” which suppress the immune system to prevent it from fighting itself. However, in suppressing the immune system, she’s at an increased risk for infections and rare cancers. She’s also been on Prednisone on and off for the entire time she’s had this, and that has caused osteoporosis.

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Now at 26, Kelly’s Crohn’s has made it impossible to attempt to retain a semblance of normalcy.

A month ago, Kelly’s gastrointestinal symptoms of Crohn’s disease became debilitating. She lost her appetite, and even when she could eat, food went right through her. As a high school English teacher, she found herself trying to juggle finding the energy to go to work and stay in the classroom and out of the bathroom, but within days, she couldn’t do it anymore.

She left work one day and hasn’t been back to it in over three weeks. During that three week time period, she lost over 20 pounds, and was admitted to the hospital on February 12th after a night of throwing up bile and shaking uncontrollably from the dehydration. She spent two weeks there getting infusions to calm the symptoms.

The doctors and nurses have been absolutely extraordinary, but we know that there is a lot that needs to be done going forward. The medication she’s been on includes high doses of steroids, Remicade (a TNF inhibitor given by infusion), and pain medication to keep her from crawling out of her skin when her symptoms go through the roof.

She’s also had a PICC line in that is giving her the nutrition that she needs since food has mostly been out of the question. Over the last couple of days, she’s been able to eat small meals, but only with the assistance of the anti-nausea medication Zofran and pain medication Tramadol—without those two medications, her stomach wouldn’t be able to handle food.

The Remicade and steroids have her body feeling like a nuclear power plant. The drugs are covering up the symptoms, but they are not assisting the root of this horrendous disease. She’s going to have a ton of medical costs coming up, with follow up appointments, as well as travel to the Mayo Clinic in Minnesota to meet with the best doctors in the country that work with over 4,000 Crohn’s patients per year.

Along with the exorbitant medical costs, over the next few months while she is on a leave of absence from work, she will also be getting treated through the treatment programs proven effective by the Gerson Clinic. However, natural treatments are not covered by insurance at all.

Kelly is an English and Special Education teacher, as well as an avid writer (she has contributed to elephant journal, Honolulu’s Civil Beat, and Hawaiian Airline’s magazine Hana Hou!) but with these events she needs to take extended leave. Luckily, she will be able to apply for leave-share through her job, but even with her and my income combined, we are just able to make ends meet. There is no room to spend more on medical bills and natural treatments.

My wife is the bravest, and most positive person that I know and I am so proud to be her husband.

Update from Kelly’s sister, Kristin:

The support from her community and her students has been huge—anyone that knows Kelly can attest to her indomitable cheer, her unending sunshine and warmth, and her infectious (ridiculous) laugh. She inspires us all to be happier, to be better at today, through her beautiful example. She fights harder for her students than anyone I’ve ever met. She fights hard for her family, for her friends. Her loyalty is fierce—she’s like a tiny smiling kitten, with big claws.

Within one week, we have raised enough funds to get Kelly to the Mayo Clinic next week, where she will see the best doctors in the country. She and Sean are so blessed to have such an incredible community of support—thank you so much to everyone that has donated and offered their kind words and love!

Big news!

GiveForward emailed me (Kristin, Kelly’s sister) today and said that they are so touched by Kelly’s story—and her beautiful smile, even in her hospital bed—that they want to contribute $300 in matching funds from the GiveForward community fund—if we can hit $10,000 by midnight on Sunday the 1st of March.

I’m confident that we can do this. We have done so much and moved so far together already—and together we can help get Kelly to her ultimate health, for the first time in her very young life.

If you’ve given already, would you please share this site personally with at least one other person who might be in a position to contribute, or share? We can share on Facebook, as well as any non-Facebook social networks, and send it through email.

Thank you all so much for your love and support. You have made a huge difference to us, and to Kelly and her family.

With love, and good health, always,

Kristin

Donations to Kelly’s Smile Fund can be found here.

To send positive vibes and virtual hugs, visit Kelly’s freelance page.

 

Author: Sean Owens & Kristin Diversi

Editor: Catherine Monkman

Photo: Author’s Own

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