It was during a routine 20-week ultrasound that Rose and Jeffrey Karlan first learned something might be wrong. The couple was expecting their first child, a routine pregnancy. Suddenly, that changed when the technician said there might be complications.
'We were told it was no big deal, a simple fix at birth," Rose Karlan said.
It didn't turn out that way.
Harrison Elijah Karlan, the son of Rose, a nurse at Johns Hopkins Hospital, and Jeffrey, an information technology administrator at Johns Hopkins University, was born on Oct. 27, 2012. He was born with end stage renal failure, a disease so rare in infants that nurses in the NICU hadn't seen a case in years.
Rose Karlan, 28, talked about the experience the Owings Mills couple went through.
"Harrison was started on peritoneal dialysis immediately after birth," she said of the infant, who spent over 100 days in the NICU, came home briefly, then returned to the hospital.
Her husband, 35, was a blood match for Harrison. "Our long-term plan was to wait for him to be big enough, usually around two years of age, for a kidney transplant," Rose Karlan said. Her husband even began to get in shape for the day he could donate a kidney to Harrison.
While Harrison was in the NICU, Rose began doing research on kidney disease. There was no history of the disease in their families. "I found the National Kidney Foundation of Maryland's Website and decided to join," she said. "I wanted to help find a cure and to raise awareness."
Tragically, Harrison died on Feb. 13, 2013. Since then, the Karlan's have formed Harrison's Heroes after their son. Last year, they mobilized family and friends to participate in the Baltimore Kidney Walk, the National Kidney Foundation Maryland's (NKF-MD) largest fundraiser. This year's event is May 4 and starts at Camden Yards.
The couple single-handedly raised $21,000 for the 2013 walk, a record for the entire country. For the annual event, they enlisted 75 people to walk as Harrison's Heroes, used social media to get donations and held a happy hour at a local bar to raise money as well.
An estimated 26 million Americans have kidney disease or, put another way, more than 10 percent. In Maryland, one in nine Marylanders have kidney disease; among African-Americans, for whom the disease is more prevalent, one in eight, according to Christie Vera, vice president of development and marketing at NKF-MD.
A nonprofit, voluntary health organization headquartered in Lutherville, NKF-MD's service areas cover central Maryland, Eastern Shore, part of western Maryland and the Delmarva Peninsula, including parts of Delaware, Virginia and West Virginia. The foundation is celebrating its 50th anniversary year as an affiliate of the National Kidney Foundation.
NKF-MD's largest fundraising activities are the four walks it holds in its service areas. The Baltimore Walk is the biggest of the walks, last year raising $315,000 out of a total of $430,000 for all the walks.
"We cannot survive without our volunteers, especially people so dedicated and committed as the Karlan's," Vera said of NKF-MD, which has an annual budget of approximately $1 million.
Most people aren't aware they have kidney disease until it reaches the point where they need to be on dialysis or have a kidney transplant, Vera continued. Diabetes and uncontrolled high blood pressure are the leading causes of kidney failure although there are types of inherited kidney disease as well.
The money raised by walks and other fundraisers goes to the several different programs NKF-MD sponsors. They are held throughout its service areas several times a year, with a focus on community-based screenings.
One program is KEY, which stands for Kidney Evaluate Yours, a free screening to detect early markers of kidney disease. Last year, NKF-MD screened over 1,000 people; this year, it has already screened 800 people to date. "We're looking to increase the number," said Vera.
Another program is KHRA, Kidney Health Risk Assessment, for early detection. Offered at expos, health fairs and community events around the state, NKF-MD last year saw 1,000 people.
"If you can detect the disease early, there are exercises, medications and different plans to slow and/or prevent the disease. That's why we're out there in the community," said Vera of NKF-MD, which also has monetary grants for qualifying patients; an outdoor program for children, teens and young adults with kidney disease; and research grants to Johns Hopkins and the University of Maryland.
As for Rose, she has already begun preparing for the 2014 Kidney Walk, scheduled for May 4. She has done speaking engagements at Kidney Foundation events and volunteer award ceremonies. She's given interviews on television and to the media. She is recruiting walkers for Harrison's Heroes. This year, the Karlan's goal is to raise $25,000.
"I want people to realize kidney disease is one of the most common, and that screening helps to detect it," said Rose.
The National Kidney Foundation of Maryland's 2014 Greater Baltimore Kidney Walk will be held on May 4 at Camden Yards. Check-in time is 9 a.m. For registration and/or donations, go to the NKF-MD website at http://www.kidneymd.org.