Generosity of community helps Lydia keep on fighting

Pictured is the group Tuesday at Stubborn German after learning the amount raised for Lydia Boyer. Lydia is pictured on the lap of her mom, Kayla, while her dad, Josh, sits at the far left.

Lydia Boyer needs a miracle.

Stubborn German Brewing Company owners Chris and Tammy Rahn did their best this weekend to make sure she gets it.

“I’ve been following Lydia through Facebook for months,” Tammy said. “My heart just goes out to the family. Our kids are about the same age.”

Tammy and Chris had made a couple donations to the Boyers but “it just didn’t seem like enough,” Tammy said.

She spoke with Chris and they decided to donate half their brewery’s total sales on Saturday.

“Being a new business, every dollar counts. We have bills we have to pay,” Tammy said.

But they didn’t hesitate to set up the fundraiser.

At the same time, the Rahns got on the Explore Waterloo page for business owners and explained their plan to see if any other businesses would want to join in. Tammy expected three or four might.

What came next would surpass what they could imagine.

“Everyone jumped on it,” she said. “Everyone just stepped up and said this is the perfect opportunity for us to donate.”

By Friday evening, Sarah Deutsch with the city of Waterloo had counted more than 30 businesses that had signed on to participate in some way, whether offering to donate a portion of proceeds or even simply setting out a donation jar with the promise to match whatever was put in there. By Saturday morning, the number had grown to closer to 70 businesses.

“It feels like every Waterloo business participated, whether directly or indirectly,” Tammy said.

Then Tammy initially proposed the idea to Lydia’s dad, Josh, she said she thought they might be able to raise $1,500 to $2,000.

“It ended up being one of our top three sales days,” Tammy said. “We did right at $10,000.”

Combining the bar receipts with tips donated by bartenders, donations and checks dropped off — many by total strangers from the St. Louis area who had seen coverage of the event on TV news, — Stubborn German had a check for more than $13,000 for the Boyers.

And that’s just from Stubborn German. The rest of the numbers are still pouring in. The donation was presented Tuesday night to Josh Boyer at Stubborn German, with the proceeds from all the fundraisers that took place around the county.

“Incredible. It’s the most incredible thing,” Josh Boyer said. “I’ve just been blown away. Words are not adequate for how we’ve felt. It was like Lydia had her own little holiday.”

If anyone deserves her own holiday, it’s Lydia. She’s already traveled an unimaginably difficult road, and the one ahead of her could be even harder.

The 6-year-old was diagnosed with an aggressive tumor on her brain and spine when she was 5.

“It’s extremely aggressive,” Josh said. “I feel like we’re on borrowed time; we always have been,” Josh said.

She underwent surgery, radiation and intensive chemotherapy treatment in an attempt to cure her little body of medulloblastoma, one of the most aggressive tumors out there. She completed treatments and even got to “ring the bell” — a tradition for cancer patients who have taken their last round of chemo or radiation. But just days later, Lydia was rushed to the hospital, suffering from seizures that lasted for days.

After a battery of tests, the results were devastating. The cancer had returned.

“They say there is no known cure for a recurrence,” Josh said.

But Lydia’s story doesn’t end here.

There is a trial at the University of California-San Francisco, where they are testing a treatment involving the modified measles virus that has shown some promise on adults but hasn’t yet been used on children. Lydia has been accepted into the trial. But there is a hitch — a big one.

“Insurance is the barrier,” Josh said. “It’s a debacle because we’re through the (Affordable Healthcare Act) marketplace.”

When the Boyers’ third child arrived, their family size changed and so did their insurance.

“We were forced onto medicaid,” said Josh, the youth pastor at Hope Christian Church. “We’ve had to deal with that, which delayed her initial treatment — it’s just been all types of problems… Who knows for sure, but if we would have known the full 30 days earlier, we could be talking about a different story.”

Because California doesn’t have a medicaid contract with Illinois, according to California, it appears the Boyers don’t have medical insurance.

Josh and his wife, Kayla, are fighting for their daughter with all they have. They’ve contacted local and state politicians including Mike Bost, Dick Durbin, Jerry Costello II — even President Donald Trump — all looking for someone to help their little girl. So far, only Costello’s office has tried to help.

Currently, the Boyers are waiting on an estimate for what Lydia’s trial and associated expenses could cost.

“We’re waiting for the system to correct itself and make a way or we’re willing to pay cash up front and we’re waiting to see what that will be,” Josh said.

And a huge group of Waterloo businesses helped the Boyers take one big step forward in being able to fund Lydia’s trial if an arrangement between California and Illinois can’t be reached.

In the meantime, the Boyers are waiting. They have living arrangements in California lined up. They’re ready to leave for the trial this week if possible. They worry that every day they aren’t doing something to treat Lydia’s tumor it continues to attack a little body that has been under assault for so long.

Just a handful of the businesses and organizations that participated Saturday included JV’s Downtown Bar & Grill, which had to disconnect their phone after being inundated with pizza orders; Bountiful Blossoms, which raised more than $2,000; Walmart raised $2,100; and the Waterloo Chamber of Commerce donated more than $1,600. Imo’s donated pizzas to Stubborn German’s hungry patrons and employees throughout the day and Bean Tree Cafe management had to run to the grocery store to buy more food to serve.

Pizza Hut franchise locations across St. Louis and southern Illinois are offering 20 percent of sales April 8 to benefit Lydia (with a coupon). Visit the Hope For Lydia Facebook page for the coupon.

There are scores of stories like this, of businesses and people stepping up. And there are still opportunities to help. The Waterloo and Columbia school districts are collecting this week.

For those who missed Saturday’s massive fundraiser, there are still plenty of ways to help.

Donations can be made directly to the House of Neighborly Service. The organization has been distributing monthly funds to the Boyers since Lydia was diagnosed, sending just under $20,000 so far. HNS is continuing to accept tax-free donations, all of which go to the intended party. Mail a check to P.O. Box 367, Waterloo IL 62298, made payable to HNS or Josh Boyer.

“House of Neighborly Service is thankful to be in this position to help Lydia and her family and we are here to do whatever is needed,” said Waterloo School District Wellness Director Kelly Lerch. “We will continue to be here for our Monroe County families as long as there is a need. If anyone has questions, please call our office at 939-8900 or call our Help Line at 939-8680.”

To keep abreast of the latest developments with Lydia, visit Facebook.com/HopeForLydia.

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Andrea F.D. Saathoff

Andrea is a graduate of Gibault High School and the University of Missouri School of Journalism, the University of Missouri Harry S Truman School of Public Affairs and Southern Illinois University Edwardsville College of Education. She lives in Columbia with her husband and their twin toddler sons. When she isn't cheering on St. Louis Cardinals baseball or riding the emotional roller coaster of Mizzou Tigers football, she enjoys attending and participating in the many family events the county has to offer. email: andrea@republictimes.net
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