An Oregon couple are biking along historic Route 66 from Chicago to Santa Monica, California, to raise awareness and money for a rare genetic condition that afflicts their grandnephew in Issaquah.
The 2,400-mile, five-state journey of Jean and Bruce Dransfeldt will benefit RhizoKids International, an Alabama-based foundation that raises funds for the research of Rhizomelic Chondrodysplasia Punctata, or RCDP. RCDP is a condition believed to affect fewer than 100 people worldwide, which causes severe physical and intellectual developmental delays. Most children with the condition do not achieve developmental milestones such as sitting upright on their own power, and rarely live past 10, according to information from the National Institute of Health.
This is the third cross country bike trip the Dransfeldts have taken together and their second for RhizoKids.
“The first one we did was in 2012 in celebration of Bruce’s 70th birthday,” Jean said, speaking Aug. 12 from St. Louis, on a rest day. “Our second, in 2013, was the first one we dedicated to our grandnephew Caden. We would talk to people and hand out cards along the way, really raising awareness more than anything else. So on this trip we’re attempting to raise some money as well.”
Caden Grant was born with a fraternal twin, Jay. They seemed like equally happy and healthy babies but over the first few months their parents noticed Caden wasn’t developing as quickly as Jay, mother Betsy Grant said.
“He wasn’t following objects and he wasn’t doing the same things his brother could do,” she said.
A doctor told her not to worry at their three-month well-child checkup but, at six months, Caden was diagnosed with bilateral cataracts that had to be corrected by surgery. Blood and genetic tests confirmed he had inherited recessive genes from both parents that manifested as RCDP.
“We were told he likely wouldn’t make it past 2,” Grant said. “The doctors told us 50 percent of children with RCDP pass by 2 and 80 percent by age 5 and I was sitting there holding my 12-month-old child trying to understand. He seemed healthy … I felt shock. I felt sadness.”
Caden, now 8, beat expectations. As he grew, he would turn out not to have the severe dwarfism that comes part and parcel with most cases of RCDP. But his condition requires regular medical check-ups, special needs education and physical therapy.
Through RhizoKids, Grant obtained resources for what she could expect from Caden’s condition and found emotional support at the organization’s annual conference. Because of the disease’s rarity, the few other parents in the world are the only outside source of common understanding, Grant said.
That provides plenty of opportunities to educate strangers about RCDP, Jean said about her and Bruce’s bike trips.
“When people see us we’re kind of an unusual sight, so people will get curious and talk to us on our own,” Jean said. “Most of the time, no one has heard of the disease. People will tell us stories about how they know someone with another rare disease or how they may have heard about [RCDP] in passing, or that it sounds familiar. Big diseases have a lot of attention and big events but the rare ones don’t have nearly the same exposure.”
At the time of her interview with the Reporter, Jean said she and Bruce had just left the flatlands of Illinois for hillier terrain west of the Mississippi.
They expect to reach Santa Monica in October. In the meantime, they’re living from their bikes, cycling through the same three sets of clothes and taking every fourth day for rest and laundry in motels. Occasionally, they rely on kindness of strangers. On a previous trip, they left a motel and broke a bicycle spoke; when a bike shop owner heard their story, he repaired the bicycle gratis.
“The truth is, we meet more people who go out of the way to help us than anything else,” Jean said.
The Dransfeldts’ trip can be tracked through their Facebook page, “Bike for RhizoKids Route 66.”
