Family's run honors son who died from CHARGE syndrome

Mothers will tell a pregnant woman that how her baby acts in the womb is a pretty good predictor of the child's personality.

For Sandy Kurby, carrying her son Joshua through a troubled, shortened pregnancy was only the beginning of the difficulties that lay ahead for her baby boy.

Joshua fought to be born early and forced himself and his twin, Joey, into the world ahead of schedule. But while Joey was healthy, Josh didn't cry after he was delivered — the first sign that something was wrong.

Kurby, of Carol Stream, and her husband, Phil, soon learned that Josh had CHARGE Syndrome, a collection of birth defects that can be traced back to a mutation on a single gene.

Like many children with CHARGE, Josh had difficulty swallowing and required a feeding tube. He was deaf, and though many children with CHARGE also have vision loss, Josh could see and took in the world's colors with his big, blue eyes, Kurby wrote in the family's blog.

Babies with CHARGE also commonly have complex heart defects, trouble breathing, balance problems and more.

Because CHARGE encompasses a range of birth defects, it's difficult for doctors to predict how a child will fare. Some children with fewer and more minor defects grow, receive treatments, become medically stable and learn to overcome challenges and developmental delays.

For other children, the medical issues are too profound, as they were for Josh. He died March 14, 2009, leaving life just more than eight months after he'd pushed his way in.

The Kurbys found great support in the CHARGE Syndrome Foundation while Josh was alive and continued their connection with the organization and the many member parents they'd met even after Josh's passing. To show their support, the family organized the first 5K fundraiser for the foundation in August 2009.

The third annual Joshua Kurby Charge for CHARGE 5K steps off at 8 a.m. Saturday, Aug. 20, in Armstrong Park in Carol Stream.

Among the runners and walkers Saturday will be David and Jody Wolfe of Buffalo Grove, whose son Ethan is passing milestones and overcoming the challenges of CHARGE Syndrome. Today, the couple shares their experience with CHARGE and the Kurbys' run.

Ethan's story

In 2002, our son Ethan was born with CHARGE Syndrome. The first four months of his life were spent in the hospital, where he underwent many surgical procedures and struggled to become medically stable enough to come home.

We worried about whether he would survive and what type of life he might have. While many of the medical professionals were uncertain about his future and unable to give us many answers, the CHARGE Syndrome Foundation provided us access to information that gave us hope our son could lead a long, meaningful life.

Ethan has continued to amaze us with all of the challenges he has overcome. Like many individuals with CHARGE syndrome, he is deaf-blind and has a variety of medical issues that affect swallowing, balance, breathing, and behavior.

CHARGE syndrome has taught us to appreciate the little things in life. As our older son passed the many milestones in his life, we took too many of them for granted. When Ethan learned to walk at 4 years old and began to eat at 7 years old, we stopped and took notice. As he began to read, use sign language to communicate, navigate his computer, and show his father how to use an iPad, we celebrated each accomplishment.

We know Ethan will face many new challenges. Given his determination and strong will, we are confident he will continue to succeed.

The CHARGE Syndrome Foundation has been instrumental in connecting us to other families who share similar issues and a passion for CHARGE. It is a lifeline for all of us who have children or family members with CHARGE syndrome.

Unfortunately, CHARGE syndrome still takes too many children from us. We never had the opportunity to meet Joshua Kurby. The Kurby run/walk is a great opportunity to honor the memory of those individuals with CHARGE like Joshua who passed away and to share time with friends.

Even though we are not avid runners, this event is a great reason to get off the couch and get involved. The Kurby fundraiser helps give all of us the opportunity to make a difference in the lives of all individuals with CHARGE syndrome and their families.

We run to create awareness about CHARGE syndrome, to honor those who can't run with us, and to make sure the CHARGE Syndrome Foundation always will have sufficient funds to carry on their work on behalf of all those with CHARGE.

Thank you to the Kurbys for giving us all a chance to share their event!

To learn more about CHARGE Syndrome, or to support the foundation, visit the foundation's website at chargesyndrome.org. You can also click on tiny.cc/charge5k to donate directly to the Kurby Run.

If you go

What: Joshua Kurby Charge for CHARGE 5K

Why: Proceeds benefit the CHARGE Syndrome Foundation

When: 8 a.m. Saturday, Aug. 20; check-in and registration begin at 6:30 a.m.

Where: Armstrong Park, 391 Illini Drive, Carol Stream

Cost: $20; register online at signmeup.com, search for CHARGE

Info: tiny.cc/charge5K