jogging for jonah

My favorite time of day right now is after dinner. The boys are restless and Shawn is yearning for some quality time with them, so our living room floor turns into a wrestling match. All Shawn has to do is lay down on the floor and the boys know what’s in store. They immediately get a running start and jump on him – squealing in glee when he lifts them up high and drops them – waiting until the last minute to catch them. Sometimes I use the time to busy myself with tasks needing to be done, but when I can I love to either join in or park myself on the couch and observe. In that quiet moment of my mind, I always, always think of Jonah. Matt and Patrice work hard to give him a normal childhood, but I know he misses out on this kind of wrestling with his Daddy. He doesn’t get the raspberries on his belly my boys get, or the smothered neck kisses I dole out.

Jonah’s little body was born without the protein that binds his skin to his body, making his skin incredibly fragile. The technical term for his condition is EB, although because of the fragility of his skin the afflicted children are often called “butterfly kids.” Despite some promise in the field of research, there is currently no cure for EB.

I want to see  a cure for EB found within the lifetime of Jonah and Anton. It’s possible. It’s very possible. Would you like to know what is hindering the progress?


Research – especially for a condition like EB – is not cheap. It takes time and money, and a lot of both. Since I’m not able to slow time down, it’s important to me to help with the money aspect. I’ve donated to dEBra, I’ve donated to EB research fundraisers, and I’ll continue to do so. Patrice came up with an idea though, that marries two things about which I’m very passionate.

Running and a cure for EB!

The Jogging for Jonah 5K is taking place on May 12th. What’s that? I can jog 3.2 miles AND I justsohappen to be free on May 12th? I would say it’s perfect, except the event is in Winston-Salem, NC. Where I no longer live.

A tiny little thing like several thousand miles [and super expensive plane tickets…I checked] won’t stop me though, so I’ll be doin’ my jogging thang right here in good ‘ole Texas!

I’ll be doing the 3.2 miles on May 12th, and I would love for you to sponsor me. It basically means you’ll just donate online, and ALL the money goes to EB research. Literally. Every penny you donate.

The donations are also tax deductible, so if giving a few dollars to help fund research that will change lives of children isn’t enough of a reason…you can write that puppy off for the tax year! And please believe me when I say that no donation is too small [or too much..ha!]. A dollar is a dollar and will make more of a difference than you know.

Sponsoring my run is so easy, just CLICK HERE. And won’t it be incredible when I can write a post about how a cure for EB has been found? Please help.


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