Crowdsourcing helps local boy with health issues

Lawrenceville preschooler gets help from strangers

4 Comments

cason-471x500When Cason Griffith had severe eczema as an infant, his pediatrician said hopefully he’d outgrow it. But more than four years later, the Lawrenceville preschooler has continued to have skin issues so serious that they make him absolutely miserable.

He has trouble sleeping, scratches his itchy skin until it bleeds, and cries whenever he touches water because it burns so badly. He’s also had several staph infections from the scratching and lots and lots of allergies.

“Right around when he was two, his pediatrician was pushing us to test him for allergies because allergies and eczema go together,” says his mom, Kelly Griffith. “The nurse called and said he tested high for everything they checked him for. She said, ‘You need to go see an allergist. Tell him he’s allergic to everything under the sun.’”

Cason has seen several dermatologists and allergists, all trying to alleviate his aching and get to the source of his constant discomfort. He’s taken many medications and his mom says they’ve done very little to help. Hoping to offer an alternative, Cason’s allergist told the Griffiths about the pediatric atopic dermatitis program at National Jewish Hospital in Denver.

The program lasts for as long as two weeks. Cason would meet with a team of specialists as an outpatient each day as they work to come up with a plan for diagnosis, treatment, and management of his eczema and allergies. Family education, as well as counseling and therapy, are all components of the plan.

“Cason’s allergist told us about it more than a year ago and warned us it was very expensive, but at the time I was pregnant with my second child,” says Kelly. “We pushed it under the rug because we thought from a money perspective, it wasn’t feasible for us.”

Oliver was born a short time later and the medical issues continued. Cason’s new brother had Down syndrome and immediately started battling issues with congenital heart defects, hearing issues, thyroid problems, and eye issues. He had open heart surgery and spent time in the hospital.

“It’s been a crazy year,” says Kelly.

In the meantime, Cason has been getting worse.

“He’s been so miserable, we finally decided we had to get out (to Denver) and make sure we give him a chance,” says Kelly. “It really came to a head over Christmas. We had family visiting us and I think that was the first time they realized how really bad it is and how much it affects us.”

Kelly says they won’t know the exact cost of the program until they know which tests are needed and how much of it their insurance will cover. She believes it will be between $10,000-$20,000, not including transportation, hotels, and meals while they’re there.

Some family members offered monetary support. Even though Kelly and her husband, Clint, both work, the bills would be astronomical and they had no idea how they would be able to pay them. Clint’s sister, Christy Tennant, stepped in, deciding to harness the power of social media.

She created a GoFundMe account where family and friends could contribute. But word has spread and even strangers have donated $10 or $25. So far, the site has raised $6,670.

“We’ve been completely shocked. It’s been completely overwhelming the amount of support we got,” says Kelly. “We were just thinking we’d be so grateful even if we can get just a little bit of help. We weren’t expecting this many people, people we don’t even know, to help us out. We don’t have words to describe it. It just leaves you speechless.”

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Comments

  1. jm

    February 19, 2014 at 9:32 pm

    Really interesting Mary Jo, thanks​!​

    I think that you would be really interested in some recent research that I have come across explaining crowds, open innovation, and citizen science.​ ​In particular I feel you may find these two emerging pieces of research very relevant:

    - The Theory of Crowd Capital
    http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2193115

    - The Contours of Crowd Capability
    http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2324637

    And you may also enjoy this blog about the same too:
    https://thecrowdsociety.jux.com/

    Powerful stuff, no?

  2. Amanda Quintana

    February 19, 2014 at 11:31 pm

    I surely hope the atopic dermatitis program helps Cason feels better. Crowdsourcing at its finest!

  3. Jackie

    February 26, 2014 at 2:06 am

    Why not find out how much the program costs before asking for money. Some people might be more comfortable giving if they knew what the goal was.

    1. Heather Ordover

      March 5, 2014 at 1:28 pm

      Because they can’t know ’til the docs see him. They could probably ball-park it, but it’d be a useless range, like “$5,000-$100,000 of which their insurance may only cover 40% of some of the procedures.” With kids–evermore so than adults–it’s so hard to estimate how many problems could be hidden under the primary issue.

      I’ll donate because–even if they get “more than is needed” for Cason, the new baby has issues too. The family needs a break, and when my son needed emergency surgery, it was the kindness of strangers that saved us. It’s an amazing and wonderful thing to have people care enough to help.