WE HEART ZOE: CoMo teen's online fundraiser latest grassroots healthcare innovation

The uplifting part of a difficult journey

COLUMBIA, Mo 6/4/14 (Feature) -- Zoe Enderle Wagner first noticed the unwelcome visitor when she saw tiny dots on the bottoms of her legs. 

 

Too many to be bug bites and too small to be freckles, the dots captured the Columbia teen's curiosity.  A few hours research gave her the answer. 

 

"Thrombocytopenia," she told her mom.  And the adventure began. 

The unwelcome visitor turned out to be Acute Myeloid Leukemia, a cancer of the blood normally associated with adults and so rare in children, only 500 cases were reported last year.  Thrombocytopenia -- a decrease of blood platelets -- is one symptom.   In the month or so since Zoe's diagnosis, friends, family, and well-wishers have rallied with a year-long online fundraiser halfway to its $30,000 goal in just over 30 days. 

Though Zoe, 15, and her family have health insurance, "helping Zoe get better will require all sorts of things NOT covered by insurance," explain the fundraiser's organizers, Kim Wade, Tracey and Mark Westfield.   Co-payments, travel expenses for treatments outside Columbia, time off work, and so forth "can amount to literally tens of thousands of dollars added to the family's daily cost of living." 

The leukemias are a group of blood cancers with different characteristics that affect different populations (Acute Lymphocytic Leukemia, for instance, normally affects small children).   In the bone marrow, which produces red and white blood cells, platelets, and other components of normal blood, leukemia overproduces white blood cells, or leukocytes. 

The overproduced leukocytes -- many of them immature and not ready for prime time -- interfere with production of healthy blood cells, literally crowding them out.   The red spots Zoe noticed on her legs were symptoms of this effect -- her bone marrow was producing too few platelets, which help coagulate blood. 

The survival rate for children with leukemia has skyrocketed 4,000 percent over the last 40 years and keeps getting better.  Reports about Zoe's progress are equally promising.  After chemotherapy, her bone marrow is gradually returning to normal.  "Preliminary bone marrow biopsy results confirm that the chemo IS EFFECTIVELY doing its job," Kim Wade announced on the fundraising site three days ago.  "DELIGHTFULLY FEW full grown leukemia cells have been detected." 

"Crowdfunding" has become a successful go-to financing tool for investments, charities, startups, and even research. 

Mizzou endocrinology researcher Susan Nagel, Ph.D. is over halfway to her group's $25,000 funding goal to study chemical fracking.  This publication raised $1,200 earlier this year, besting our goal by 20% and returning for a second fundraiser, now ongoing at the same site, Indiegogo. 

Unlike Indiegogo, Kickstarter, and other crowdfunding sites, YouCaring, Zoe Enderle Wagner's fundraising site, charges no commissions or fees.   Every penny raised goes to Zoe and her parents -- mom Amy Enderle and dad Paul Wagner -- a low-overhead scenario the fundraisers reason will help the Enderle-Wagners on what promises to be a long journey with difficult -- and uplifting -- moments.      

Zoe's mother Amy, a well-known Columbia photographer, has acted as something of a tour guide for the family's many friends and supporters, posting updates on social media and their fundraising site about the family's journey.   Ever upbeat, Enderle has passed the optimism gene to her daughter, who wrote a 4th grade poem brimming with hope, reprinted on the YouCaring site. 

"I am Big and bold, strong and glad, The color of an eye on its happiest day," Zoe wrote.  

Though the happiest day -- freedom from leukemia -- has yet to arrive, Zoe's mom is confident her daughter has all the gear necessary to see that day dawn, as their long journey crests just over the horizon.  

"She is smart. She is strong," Enderle says.  "She is fierce. She is loved."

"WE LOVE ZOE" ONLINE FUNDRAISER

-- Mike Martin