By allowing ads to appear on this site, you support the local businesses who, in turn, support great journalism.
Childrens Craniofacial Association fundraising run set for Sunday
Henry Johnson, 5, the host of Henry’s March poses for a picture with his uncle Will Scott. - photo by Journal file photo
When Rachel Johnson saw her newborn son for the first time, she wasn’t sure what to think. Henry was the only baby in the nursery who looked like he did. He had an oversized head, and his fingers and toes were fused together. Rachel waited for someone to tell her what was going on, and why her baby looked different from the others, but nobody knew.
“I’ve never felt so alone,” Johnson said.
The doctors and nurses at the hospital where Johnson delivered Henry didn’t know it at the time, but he was born with Apert Syndrome. This condition affects the development of Henry’s face and skull, and he has undergone nine corrective surgeries since he was born in 2002. All of his surgeries take place in Dallas, Texas, and the family has to travel back and forth from their Turlock home.
Johnson found that she wasn’t alone as a parent of a child who doesn’t look like his playmates. Through the Children’s Craniofacial Association she has met other parents who go through the same struggles and joys that she and her family experience. CCA holds yearly retreats where children with facial differences and their families can meet and get to know one another.
“It was the most amazing thing to see kids who look like my kid. For one week he was the majority,” Johnson said.
CCA is a nonprofit organization that helps children with facial differences medically, financially, emotionally and educationally. Johnson decided three years ago that she wanted to start a fundraiser to help the CCA help more families like Henry’s.
Although she had no experience as a runner, Johnson decided to hold a 5k race for the CCA. With the help of the CSU Stanislaus Athletics Department, she promoted her event as a fundraising race on a collegiate course, hoping to draw both serious runners and people who wanted to participate in a good cause.
“I was told that I shouldn’t expect more than 75 people the first year, because races take time to build momentum. We had about 200 people sign up for that race,” Johnson said.
As of Friday afternoon, the 2010 Henry’s March — which is scheduled for Sunday — has already received 300 pre-registered runners. Johnson expects about 450 runners and walkers after day-of registration closes. In addition to the 5K, there is also a one-mile race for adults and children over 13 years old, and a 100 meter dash for kids ages two to 10.  All runners pay a fee to enter, and funds go directly to CCA.
“The March has grown dramatically since the first year,” Johnson said.
The event now includes music, vendor booths, refreshments and goody bags. New this year is the “great waiter chase,” where participants in the one mile race chase after an Angelini’s waiter. The first person to capture the waiter’s flag wins free pizza for a year.
The 5k race is still the main attraction of Henry’s March. At the end of every Henry’s March, just before metals are awarded, Johnson takes the opportunity to talk to people about what families of kids with facial differences are going through.
“I ask people to take a moment to think about the woman who just delivered a baby she didn’t expect,” Johnson said.
That moment is what makes all of the organizing and planning of Henry’s March worth it for Johnson. She gets the chance to reach out and help create a world where that woman doesn’t have to feel so alone.
For more information about Henry’s March, visit or click on the “Henry’s March” logo at
To contact Andrea Goodwin, e-mail or call 634-9141 ext. 2003.