It's been a while since I featured a Fighter of the Week, so I'm gonna double down today and introduce you to not one, but two fierce IBD Warriors...a mother-daughter duo I am proud to say are my friends. I met Nicole through an SCD support group on Facebook last winter. Her daughter, Addy, had recently been diagnosed with Crohn's and was really struggling with her symptoms. As it turned out, she lives in Seattle and her daughter is being treated by the same doctor as my daughter. We eventually met in person along with several other SCD/IBD families in our area for an afternoon of bowling. Our girls hit it off as fast as we did and even ended up bunking together at Camp Oasis this past summer.
Addy and Nicole are two of the sweetest, yet toughest people I have ever known. From hospital stays to tube feedings and a seemingly endless struggle just to be able to keep food in her body, Addy has fought for her health with everything she has. During the spring & early summer, she spent four and a half MONTHS on enteral nutrition (ENT)...that means nothing but liquid protein "shakes" as her sole source of sustenance for 18 weeks...and she still managed to have fun at camp. How many adults do you know who could do that, let alone do it with a smile and a thumbs up?
Nicole has been fighting just as hard to help get her daughter into remission. With the blessings of their GI, she started Addy on the Specific Carbohydrate Diet (SCD) shortly after her diagnosis. Unfortunately, Addy's entire GI tract was so extensively ulcerated from her mouth to her anus, that she couldn't tolerate any solid food and as I mentioned above, needed to be stabilized via enteral nutrition. Once Addy's gut had healed, solid foods were reintroduced and SCD has helped to keep Addy in remission for the past six months without ANY medication. If that's not an SCD success story, I don't know what is.
Ultimately, Nicole wanted to do more, so she signed up for the Crohn's and Colitis Foundation of America's Team Challenge program and will be running the Star Wars Half-Marathon in Disneyland on January 18 to raise funds for IBD research. She has been training and fundraising for months and has raised an impressive $4,600 to date with several weeks of fundraising still to go.
In her own words, here is why Nicole is running:
"Almost 8 months ago my youngest daughter was hospitalized for 8 days. She had lost a ton of weight, wasn't eating, couldn't eat, hundreds of ulcers lined her entire digestive track. 8 days in the hospital, feeding tubes, invasive procedures, and days that were so frightening we worried we would lose her. The diagnosis....Crohn's Disease. A life long, life changing, autoimmune disease. The battle - fighting to find a cure.
As I write this, the images of my baby fighting in the hospital brings tears to my eyes. I know the fear I felt, I can only imagine the fear she felt. Today she continues to live with this disease. Some days are amazing and she feels "normal". Other days she lives the life of a little girl wishing for some normalcy and no pain. I am not a runner, but I am training to run and raise funds to help find a cure for this disease. I don't have control over how this disease affects my child's life, but I have control over fighting on her behalf. She isn't alone."
If you would like to help Addy and Nicole in their fight to find a cure for Crohn's Disease and Ulcerative Colitis, you can make a tax-deductible donation to the CCFA via Nicole's fundraising page here: http://www.active.com/donate/starwarsdisney/swnKittel
Another way you can help is to purchase an IBD Warrior t-shirt or hoodie like the one Addy is holding below. I designed these especially for Nicole and Addy, and you can purchase yours on TeeSpring here: http://teespring.com/remissionisnotacure You can also purchase a more masculine version that Nicole designed here: http://teespring.com/myguts These campaigns will run through December 17th, with all of the proceeds going directly to the CCFA to support research and patient programs. These would make wonderful holiday gifts for the IBD Warriors in your life...just sayin'. ;)
I am so proud of Nicole and Addy and am grateful for their inspiration and massive fundraising efforts. Awareness is a wonderful thing, but truly, money makes the research go 'round. Even though Addy is in remission now, she is not cured. Her body could decide to launch a new attack on itself at any time. The ONLY way to put a stop to Inflammatory Bowel Disease is to find a cure. And that takes money. If you have been touched by Addy and Nicole's story, please consider donating to Nicole's Team Challenge campaign...every little bit helps: http://www.active.com/donate/starwarsdisney/swnKittel
Thanks so much for stopping by and for supporting this week's Fighters in any way you can. If you're unable to donate, please take a minute to leave some supportive comments for Nicole and Addy.