Caleigh Hoban, 8, kicking back before
the 5th Annual KK's 5K Race
Here's a story of an early encounter I had with my niece, Caleigh Hoban:
A few years ago, perhaps 8 or so, I paid a visit to my brother Jim, his wife Colleen and their two daughters--Maddie who was two at the time and six-month old Caleigh or "KK"--as her new phonetically lettered nickname would be pronounced. The reason for the visit escapes me now, but I stayed for dinner that evening. While the parents prepared the food in the kitchen, I took my place at the dining room table with the girls. Maddie in her chair. Me in mine. And Caleigh (all 15 lbs of her) snug in her car seat and plunked smack dab in the middle of the table. No finer centerpiece in the great state of Delaware could goo-goo and gaa-gaa like that kid could!
Anyway, as we three waited, Maddie and I clinked glasses with whatever fashionable drinks we sipped away at, when--without warning--an amazing (and I mean AMAZING!) geyser of frothy liquid arced across the dining room table. I tell you that stream took the most perfect parabolic path in midair. It would appear that the baby's tummy didn't quite take to the most recent feeding and so it decided to anoint the head of the table's place setting with gak! Splash, crash and dash. In that order, the sounds of liquid discharge, a chair hitting the floor and me scrambling around for anything to "plug up the hole''!
My brother and sister-in-law emerged from the kitchen, wondering what all the fuss was about. Maddie laughed, Caleigh dripped and I stood in a less panicky cold sweat. A moment later and the mess was cleaned and dinner commenced.
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Though this was a funny scene then, unfortunately for Caleigh and her parents, many more similar events played out to the point where Jim and Colleen knew that something was wrong with their daughter. They would learn, after many hospital visits and test after test after test, that Caleigh suffers from a rare disease known as eosinophilic esophagiti or EE. In essence, Caleigh is allergic to food. Not certain types of food. Food. Period. She cannot eat any and all foods that we take for granted. If Caleigh were to do so she would experience intense belly pain and white blood cells would buiild up in her esophagus, and evenutally close her esophagus.
With the help of their doctors and a growing network of similarly affected individuals, Jim and Colleen were able to get the diagnosis that Caleigh's affliction is indeed EE. Since that time valiant attempts at treating the disease began and continue to this day. Currently there is no successful all out cure. Caleigh subsists on a regimented diet of special amino acid shakes and the occasional Dum Dum lollipop. Aside from short trial periods of eating certain fruits, this is all that Caleigh has been able to injest for the past nine years. Can you imagine? Never a Thanksgiving dinner. Nor a hotdog with all the fixings. Nor a single cookie. (Just one?) No. Not permitted. Can you imagine what it would be like to blow out the candles on your own birthday cake and know that you're the only one not allowed to have a piece?
I can't. But it always breaks my heart to think of her in that situation.
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But then there are the many good times we share with Caleigh and her mom and dad and her brother and sister. One such annual event is the 5K run that Jim and Colleen organize every year in Wilmington, DE. The charity run raises dollars and awareness to the little known disease from which Caleigh and other children suffer.
Last week marked the 5th Anniversary of "KK's 5K Run", a race that loops around the Wilmington waterfront along the Christiana River. A great turn out of over 130 runners and walkers raised money by hitting the asphalt. I decided to "sit out" this year's run to document the event (and, you know, to allow some other competitive type to take one of the top five spots! (yeah right!))
It was a terrific night for a worthy cause. Here's to the winners in all the categories! Here's to Jim and Colleen and all the family and friends who support their cause. And here's to Caleigh: a great niece and a wonderful cousin to Anna. Keep at it, kid! I'll have a few Dum Dums for you the next time we meet!!
Here is a video compilation of scenes from the 5th Annual KK's 5K Run:






