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June 21, 2013

Announcing "Timmy's Corner"!

Welcome to a very special corner of our Blog! This is where will be featuring an ongoing series where you will meet and get to know Timmy Wright and his wonderful family. Timmy and the Wright family have been part of Team Intestinal Fortitude since its inception. As you will soon and very clearly see, Timmy is a true hero, as are his mother Kouri, his father Steve, and his younger siblings Joey and Jacqueline, who are twins!

Timmy is battling two chronic illnesses that do not mesh well together. Since birth, Timmy has been unable to produce his own antibodies, but now his body is also attacking itself. To state it simply, his immune system is not only incomplete, but is dysfunctional as well. This is a tremendous disease to battle in and of itself.

In the fall of 2009, Timmy was also diagnosed with Crohn's Disease. Crohn’s Disease is a painful and debilitating intestinal disease. This has proven to be Timmy’s biggest challenge yet. In nine years of life, Timmy has been through more than most of us have to deal with in a lifetime, but he continues to be so resilient! He is a happy, sweet, ten year old who loves his brother and sister, Pats/Bruins/Red Sox/Celtics, Legos and Star Wars. He is determined to make a Star Wars Lego video depicting his battle with Crohn's Disease, and use that to raise funds for the CCFA to cure himself, and everyone that suffers from IBD.

Kouri begins our series with the story of how Team Intestinal Fortitude entered her family’s life. And we are so fortunate to have Timmy and the Wrights in the TIF family…

TIMMY'S CORNER  |  June 18th, 2013 |  by. Kouri Wright 

Our son Timmy was diagnosed with Crohn’s Disease in the fall of 2009, when he was just 5 years old. He started having strange symptoms at the age of three, and after two years of different specialties poking and prodding Timmy, we finally had our answer. Crohn’s Disease is quite a scary disease to face, especially as a child.  Since his diagnosis, he has been hospitalized 181 days and has been put on various medications that have not put him in remission of this horrible disease.

In the fall of 2010, he was put on full bowel rest, which required him to be fed formula 20 hours a day via an NG tube. Ultimately, the tube feeding did not help. Timmy had to have over 2 ft. of his small intestines removed, and consequently spent a total of 63 consecutive days in Boston Children's Hospital. In total, he has required 3 major surgeries. This disease had impacted every aspect of Timmy’s life, as well as our family’s life. It has not, and will never define us, but coping with all the challenges this disease poses has become our new version of normal.

The experience with Crohn’s has also been positive; yes…I said the “p” word when talking about chronic illness. We have met the most wonderful, supportive people that also share and understand the challenges of Crohn’s Disease.

Team Intestinal Fortitude and the entire Marcus family are such a huge gift to our family, and the IBD Community. I can remember sitting in Timmy’s hospital room during one of his many inpatient stays, and I was looking through the Team Challenge page on Facebook. The memory is so clear of me sending Jake Marcus a message of congratulations on his fundraising and training. I was touched by his story of why he ran, for his amazing father Stephen of course, so I reached out not realizing the amazing relationship that would develop between our families. Jake sent a message back, and then shortly thereafter we set up a time for the entire Marcus family and a few member of Team Intestinal Fortitude to come to our home. They showered Timmy, and our whole family, with gifts of love, support, understanding, and toys. Since we met, we have stayed in close contact. Timmy even wrote the most adorable letter to Stephen Marcus that began with Dear Uncle Stephen.

We will continue to work together towards a common goal, a cure for Crohn’s and Colitis. Having Team Intestinal Fortitude in the hunt for a cure let’s me, Timmy’s mother, sleep better at night. I mean that with all my heart, and am so thankful that we have them in our lives.
 

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