PEORIA — If it takes a village to raise a child, perhaps it takes an army to support a family when one of those children is gone from the world too soon. 

Adam and Christine Simmons have twice found themselves in situations as parents that they'd never thought they'd face. First, that they'd be able to have children of their own, and infinitely more shocking, that they would have to say goodbye to one of them so quickly. In the short time the couple have been parents, they've been stunned by the some of the worst circumstances imaginable — and overwhelmed by the good demonstrated by their friends and neighbors.

"We're at a time when we are very, very sad and our arms feel so empty, but we know that there's so many people that love us so much," said Christine, a Peoria Notre Dame grad who grew up in Washington. Adam grew up in Peoria Heights and graduated from Bradley University before going to work for Caterpillar Inc.

Adam and Christine have moved throughout their nine-year marriage from Peoria to Indianapolis to Pittsburgh as Adam took on different roles for Caterpillar and were considering adoption after having a child took longer than expected. They landed in Oswego two years ago, not long before the birth of their daughter, Harper, in 2014. Just more than a year later, she was joined by a baby brother, Bowden.

"I remember sitting on the couch after Harper was in bed and Bowden was sleeping," Adam said, "and we just said at the same time, 'I can't imagine life getting any better.' We were so happy."

Bowden, with shining blue eyes and an infectious smile, was, his parents say, a happy and easy baby. He almost never cried, loved to smile and slept through the night.

"Bowden has always, since day one, been super easy going and happy," Christine said. 

"He was perfect." 

A week later, Bowden came down with what his parents thought at first was a cold. When he couldn't shake it, they took him to the doctor. After multiple visits to his doctor, an emergency room flurry and middle-of-the-night transfer to Lurie Children's Hospital in Chicago, they received a shocking diagnosis.

Bowden had Hemophagocytic Lymphohistiocytosis, or HLH, a life-threatening inflammatory autoimmune disorder. At just three months of age, he was fighting for his life.

"When you or I have a cold, we have these cells that go and eat up all the bad stuff. Bowden had a condition that it was almost overactive, and it would eat up the bad stuff and the good stuff, too. It kept going at his organs, everything," Christine explained. 

It was the first of three ground-shaking diagnoses the Simmons family would receive. 

As Bowden prepared for a stem cell treatment that could save his young life, doctors discovered during routine blood work that he also had leukemia.

At first, this news came with a glimmer of hope. There are two forms of HLH. One is genetic, or familial HLH. The other is known as secondary HLH, when the disease is triggered by an underlying condition. 

If Bowden had familial HLH, that meant his sister had a 25 percent chance of developing the same disease. If his disease had been triggered by cancer, she would have no risk.

And the diagnosis of leukemia itself wasn't immediately alarming. Acute lymphoblastic leukemia, or ALL, is the most common childhood cancer, with cure rates of more than 90 percent.

But Bowden's cancer was acute myeloid leukemia, or AML, much more rare and difficult to treat.

Even then, Bowden kept fighting, as did his parents and medical team.

When his immune system was wiped out by aggressive chemotherapy treatments and adenovirus — a common virus that for most people would manifest as a cold or pink eye — again threatened his life, they continued to fight. But a "perfect storm" had rolled in, and Bowden, the son they'd felt so blessed to bring home, passed away Aug. 8, nine months and 11 days after his birth.

The months since Bowden's first devastating diagnosis have brought some of the darkest moments of Adam and Christine's lives, as well as some of the best.

Every moment with their son will be a precious memory. And they have welcomed the doctors, nurses and others who advocated for Bowden during his battle into their hearts for life. They've been floored by the generosity of their neighbors in Oswego and longtime friends in central Illinois who organized webpages and fundraisers for Bowden and helped care for 2-year-old Harper. A YouCaring page set up in their honor already has raised almost $18,000 to help cover the costs of medical care, for travel and parking incurred during Bowden's six months of treatments.

"Even with the best health insurance there are medical bills, there are drugs and procedures that aren't covered," Christine said. 

They also helped cover his funeral expenses. 

A fundraiser is scheduled for Sunday afternoon at Kouri's Pub, 4421 N. Sterling Ave., to raise additional funds for the Simmons family, but for Adam and Christine, sharing Bowden's story isn't about the money.

"Life is so precious. We are better people for having Bowden. It was our honor and privilege to be his parents, and though we had only nine months, we were so blessed by those and so overwhelmed by the communities that have supported us," said Christine.

 

Laura Nightengale is the Journal Star health and lifestyle reporter. She can be reached at 686-3181 and lnightengale@pjstar.com. Follow her at Twitter.com/lauranight.