Gathering support for kids like Cayden

Cayden Walker-Fleming, now 7, was diagnosed with a rare strain of the cystic fibrosis genetic defect when she was 4 months old. Cayden and her family receive support from the Children’s Miracle Network, for which a motorcycle rally this weekend will raise money. Courtesy photo

• Saturday motorcycle ride will benefit families served by the Children’s Miracle Network

BROOKINGS – Right now, 7-year-old Cayden Walker-Fleming’s family is overjoyed that the Brookings girl is one of just 1,200 cystic fibrosis (CF) patients in the U.S. who can benefit from a life-changing drug: Kalydeco, the first drug to treat the root cause of CF.

But they’re also thankful for the support they’ve gotten for the past seven years from Children’s Miracle Network (CMN), an organization that has helped to provide gas money for getting to doctors appointments, food vouchers to use while away from home, connection to family members who stayed home while a sick child was in the hospital, and other support.

This Saturday, Brookings will be one of several starting points for a fundraiser for CMN, called the Bikes & Babes Rally for Miracles.

Cayden’s family was told she has CF when, at the age of 4 months, she became very sick. At one point, on a helicopter flight from Brookings to Sioux Falls, her organs began to shut down and she was only saved by the quick action of a critical care doctor on the flight. Doctors then determined that Cayden has a rare strain of the CF genetic defect, and they didn’t expect her to live long.

She began taking enzymes with every meal and using a nebulizer and vest to loosen the mucus in her lungs and other organs. If healthy, she visits a pediatric CF doctor in Sioux Falls every 90 days. But because of her CF, Cayden is more vulnerable to viruses and other diseases – like Kawasaki Disease and a bacterial pneumonia called pseudomonas, which both have threatened her life.

But this March, Cayden, her parents, Ryan Flemming and Robbi Walker, and their family learned that she is one of about 1,200 people in the U.S. whose rare form of CF can be treated by Kalydeco (about 30,000 people in the U.S. live with CF).

Studies have shown that Kalydeco significantly improves lung function and reduces other CF symptoms for these patients. With it, Cayden won’t need to take enzymes with each meal or use the nebulizer and vest twice a day.

When the family worked out payment for the new medicine (at two pills a day, it costs about $330,000 per year), Cayden’s doctor and the staff at Sanford Children’s Hospital in Sioux Falls celebrated with them.

“It would be like she was their child or their family member – it was a happy day,” said Donita Fleming, Cayden’s grandmother.



Blessing to all

Sanford Children’s Hospital is the nearest hospital that treats CF patients, and South Dakota’s only hospital that has been designated as a Children’s Miracle Network Hospital. The support team that CMN builds around young patients and their families is critical for many families, and a blessing to all of them, Fleming said. Just having a CMN representative at the hospital when a family lands in the helicopter or otherwise helps to educate and reassure them.

CMN also cheers up kids in the hospital with things like stuffed animals, Fleming said, and helped Cayden’s family make the transition from the Sioux Falls to another hospital when she was a baby.

“They are helpful. They try to make a connection with whoever they can connect you with,” Fleming said.

And while the drive to Sioux Falls is perhaps a reasonable expense for Fleming and Cayden’s family every three months, for CF families coming from somewhere farther, like Rapid City, it’s much more of an expense, she said. While CMN does cap the amount of financial support it can give any single family each year, the gas money is a big help to these families.



Saturday motorcycle ride

The Bikes and Babes Rally for Miracles this Saturday will draw motorcyclists and their families from all over the state, and their $25 registration fees will go directly to CMN’s work at Sanford Children’s, to serve South Dakota kids. Because the Miss America Pageant has chosen to partner nationally with CMN, Brookings pageant participant Calista Kirby has thrown herself into helping with this year’s rally, the seventh annual.

Kirby, who is currently Miss Rushmore and will compete to be Miss South Dakota, has done the work to create a starting location for the rally in Brookings. Other starting locations include Sioux Falls, Vermillion, Madison, Mitchell, Chamberlain and Orange City.

“All these starting locations start at different times and then they have their own little poker run, or route that they do,” Kirby said.

“Then, they’ll go to the Sanford Castle, is where they’ll end. They drive through the Sanford Castle and then to a celebration at J&L Harley.

“There will be a lot of families who have benefited from Children’s Miracle Network and a lot of the kids who are the heroes there, and kind of a celebration, some fundraising events there.

“Then, there will be an escorted ride from J&L Harley to Ribfest that night, for all the bikers.”

At the post-ride celebration at J&L Harley-Davidson in Sioux Falls, Kirby will join families who have benefited from CMN in greeting riders. The ride is family friendly, she said.

Registration for the Brookings location is from 11 a.m. to noon Saturday, at the Sanford Health Brookings Clinic, 922 22nd Ave. S. At noon, there will be a blessing of the bikes, then riders will take off.

With the registration fee, riders receive a long-sleeved T-shirt, participation in the poker run with a chance to win prizes from area businesses, and free admission to the Argus Leader RibFest Saturday night.

For more information, visit www.jl-harley.com.



Contact Charis Prunty at cprun-ty@brookingsregister.com.