Emily Jo Theisen might be the most beautiful soon-to-be 4-yr-old in the world. It’s a helluva claim to make, but unlike many 3-yr-olds in this country, Emily has learned to appreciate the little things.
She didn’t get a choice.
3-year-old Emily has chronic pancreatitis. She can’t grow out of it.
It doesn’t go away with Flintstones vitamins and a couple hugs. Not even long, full-wrap bear hugs. Chronic pancreatitis creates constant, uncompromising pain.
Her nickname is Emme Jo.
Her good days are few and far between. When she wakes up and has one, she makes the most of it, as much as a 3-year-old can have with the residual energy she has left over from fighting the unrelenting pain.
Some days that rare good day starts by waking up in her own bed. Often, it’s waking up at
Riley Hospital for Children at Indiana University Health in Indianapolis or even the University of Minnesota Masonic Children’s Hospital.
And even on those days, it’s not like she gets to run around in the rain, make mud pies and chase rainbows. She’s got a medical bag she’s strapped to that provides nutrition and circumnavigates digestion so her enzymes aren’t tantalized. The bag isn’t designed for mobility, so even when she’s feeling good, she’s still tethered to the pain.
“What’s the pain?”
When your body is working properly, it can digest some of the ugliest, most harmful pre-processed concoctions the world has to offer. It’s why you can eat shitty frozen pizza and drink diet drinks without thinking twice. You can do that because your pancreas can break down food with food enzymes. These rabid little starved wild hogs are released from the pancreas and break down the food that’s palatable into little absorbable amounts. This separation of the shit-from-the-shit allows the stomach to pass on the rest to get flushed out. Even that sweetener you used in your Starbucks to save a few calories can be processed to a degree
until your liver quits trying to discern the difference.
In Emily’s case…
In Emme’s case, imagine your body trying to digest food with active food enzymes that start working before reaching the stomach. Like starved wild hogs, those food enzymes start eating the closest thing they find. In this case, they start attacking their own Pancreas. Ask Cordell how wild hogs work.
[Warning: If you haven’t seen the movie Hannibal and have a domestic constitution, you might want to not click on that. It’s not graphic, but the implications are not for the faint-of-heart].
She has the pain, swelling, and symptoms typically reserved for only the most dedicated alcoholics
Pain in stomach and back. Swelling. Fever & vomiting. Heart rate acceleration. None of them because of the good things in life.
Here. Take a look:
The first big step to start healing her is expensive and not covered by insurance.
To get relief, she has to have a total pancreatectomy and an auto islet cell transplant.
What is a total pancreatectomy?
As her dad, Chris Theisen, tells it to me via Facebook Messenger:
“They take cells from pancreas that produce insulin and transplant them into liver. Then take out gall bladder, pancreas, part of stomach, re-work her plumbing basically.”
How much does that cost?
So I’m told, the cost to Emme’s parents, Chris & Elizabeth, is north of $60,000 USD. They don’t qualify for much help. Like most of middle america, they make too much for additional support but not enough to have extra income lying around.
So we’ve turned to friends and good-hearted strangers for help.
There are incredible people out there raising awareness. One’s even biking across countr.
Mark recently ran into Dmitry Kem , the Russian runner ultra-marathoning across the country to raise awareness missing children in Russia. Dimtry gave Emme words of encouragement.
Her great uncle is getting media outlets to join in.
Great Uncle Dave even got an “Emme Theisen” day in his Florida gulf coast town.
Social media is gaining traction.
Search for #emmesmiles and you’ll see people helping out for the cause.
The Pancreatitis Foundation is helping out.
Pancreatitis Foundation on Facebook
How you can make sure Emme Smiles!
1 – Tell others her story, please.
Follow the social media accounts above. Share their updates to your networks. A little helps a lot.
2 – Chip in on the medical costs, if you can.
For one week, use the Keurig a little more and get Starbucks a little less. Tip the rest to her $60,000 medical procedure.
3 – Give nice thoughts. Always.
Anything to keep the momentum going. It will help.
“Finn. What do you get out of this?”
I get to help good people with a bevy of overburdening issues. And I might get a #Gumballhead or a #ZombieDust next time I get to go back to Indiana for something other than a family member’s joint replacement surgery or MRSA infection. Otherwise, nothing.
Well, that’s not true. If all goes well, I, too, hope to see Emme smile for years to come.
Otherwise, thank you.
There are a lot of causes in the world. I don’t know them all. I don’t help them all. But I know this one. I know it’s pure and just and good. I hope I helped you see that as well.
If you have questions about Emme’s condition or cause
I probably won’t know the answer, but I’ll be able to put you in contact with someone who can.