Come Join us for the Seventh Annual KK’s 5k on Monday August 13th, 2012
* Location: Flat, fast course around the Wilmington Riverfront and Frawley Stadium
* Race Time: 6:30 pm (registration opens at 5:30 pm at Hare Pavillion)
* Entry Fee: $20 till August 10th, $25 day of event.
* Online Registration available until August 10th at http://www.active.com
* Reason: Caleigh Hoban, nicked named Kay Kay by her sister Maddie, suffers from Eosinophilic Esophagitis, a disease that prevents her from eating food. Caleigh, like thousands of other children who suffer from EoE, undergoes daily drugs, quarterly endoscopies, and on-going food testing to find foods that her body will accept. Testing so far has been unsuccessful.
* Benefits: Eosinophilic Esophagitis Research at the Children’s Hospital in Philadelphia. All money raised from this event will go to assist EoE research at CHOP.
* Amenities: Tee shirts and Post Party with refreshments.
* Awards: Overall male and female runners and age group winners will win awards.
* Contact: For more information, contact Colleen or Jim Hoban at firstname.lastname@example.org or visit us on Facebook at KK’s 5k Run/Walk.
Who is KK?
Eosinophilic Esophagitis is a rare autoimmune disease that causes an abundance of white blood cells to form in the esophagus. These white blood cells cause rings and furrows in the esophagus and, eventually, left untreated the esophagus will close. Ten year old Caleigh Hoban, nick-named Kay Kay by her sister Maddie, was initially diagnosed with Eosinophilic Esophagitis, known as EoE, in the spring of 2004, when she was a little over 2 years old. Caleigh had EoE symptoms from the time she was three months old. It wasn't until she became a patient of her current doctor, Dr. John Murphy of First State Pediatrics (Newark, De) that Caleigh was referred to the proper specialists.
Caleigh was referred to an allergy specialist at the Children's Hospital of Philadelphia, Dr. Terri Brown-Whitehorn. After skin testing and patch testing and elimination diets, it was determined that Caleigh had a build up of eosinophils in her throat that were caused by an unknown food allergy. Since the exact food that was causing this reaction was unknown, Caleigh was put on an elemental diet and all food was eliminated from her diet on Halloween 2004. Initially, she responded well to the elimination testing and a handful of foods were cleared for her to eat. However, by the summer of 2005 she had suffered several setbacks and she was taken off of food once again. Caleigh remained on an elemental diet (that is she gets all of nutrients from an amino acid shake that she drinks every day) until watermelon was introduced to her diet in March 2006. The watermelon food trial, like all other food trials, proved to be unsuccessful. It has since been learned that what Caleigh, and children with EoE, are exactly allergic to is protein, and since protein can be found in most every food, there in is the problem.
For two years, Caleigh participated in an experimental drug treatment at CHOP. The experimental drug treatment was cancelled in August 2011. She continues to drink her "special juice". Caleigh, and other like her, are unable to eat food, and they receive all of their nutrients from a medical formula, know to Caleigh and those close to her as her 'special juice'. She undergoes daily drugs, quarterly endoscopies, and on-going food trials. Caleigh does suffer from sporadic, but intense, stomach pain, which EoE patients suffer from as they get older. Our goal is to raise money for EoE research and to someday find a cure!!!
As we stated, Caleigh drinks her 'special juice' throughout the day to receive her nutrients. Caleigh is one of the lucky patients who are diagnosed with EoE simply because she will drink her formula. Many children won't drink the formula so they have to have a feeding tube inserted in their nose or stomach in order to get their nutrition. Many children with this disease never get any foods to eat at all. One of the problems that we, and other parents, have encountered is that there is just not enough research done about EoE. The doctors just don't know enough about it. There is not much research on how this starts, how long it lasts, what medicines can help, and other questions that research will answer. For more information about EoE, please log on to http://www.chop.edu/service/center-for-pediatric-eosinophilic-disorders/about-eosinophilic-disorders.html
If you weren't told that Caleigh suffered from this, you would never know anything was wrong with her. She is currently average height and weight for her age group. Caleigh is starting 5th grade in September at The Tatnall School. She participates in all activities and events with her friends and classmates, including birthday parties and sports. Caleigh enjoys taking jazz, tap, and ballet classes at American Dance Academy in Hockessin Delaware and she swims competitively for the Western YMCA in the winter season and Skyline Swim Club in the summer season. Ironically, one of Caleigh's favorite things to do is baking! She enjoys making cookies and brownies. Unfortunately, we recently have needed to limit Caleigh's exposure to nuts and eggs due to allergic reactions from skin exposure. A common family joke is that one day Caleigh is going to be a CHEF without ever tasting the food!
To quote an amazing close family friend, Aunt Viv, "Shouldn't Every Kid Get to Eat Cake on Their Birthday?" Our hope is someday the we can celebrate Caleigh's special day or any other day so Caleigh 'can have her cake and eat it too!' Help support Caleigh, and other EoE children, by participating in KK's 5K!