Mt. Laurel resident Charmaine Gravener has been waiting to receive a kidney for the past year. But Gravener and her husband, Chuck, are not just waiting for one call.
Their children, Tyler, 8, and Charmaine, 5, have been listed for four years waiting for livers as well.
Tyler and Charmaine have Progressive Familial Intrahepatic Cholestasis — a genetic liver disease that prevents bile from draining. It builds up in the liver causing progressive liver damage.
Both children experience constant itching as a result of the PFIC. There is also a possibility they could develop cancer before the transplant.
To help promote April’s National Give a Life month, the Gravener family is participating in the 18th annual Dash for Organ and Tissue Donor Awareness sponsored by Gift of Life — a nonprofit organization in Pennsylvania, New Jersey and Delaware that is responsible for recovering and distributing organs and tissues to help save and enhance lives.
This is the first year the family is participating.
Gravener’s kidney condition stemmed from a childhood disease and got worse after she had children.
“Last year I hit 20 percent function,” she said.
Although she works full time at Westampton Middle School, and is not on dialysis, she still was placed on the waiting list.
“For kidneys, longevity counts,” Gravener said, adding the list spans five to six years.
“The hope is I will be able to maintain around 20 percent off of dialysis for the next five years or so,” she said.
Despite the discomfort and worry, both youngsters are active.
Tyler has been playing sports at the recreation center since he was 5. He plays baseball, basketball and soccer.
Gravener said she thinks his favorite sport is baseball, but basketball is also a favorite.
“It depends on the day,” she said.
Charmaine just started tap and ballet class in September. She is eagerly waiting for her June recital.
Gravener said both children know they need new livers. She and her husband, Chuck, try not to discuss their condition in depth.
“They will both tell you things like . . . ‘we can’t go to Walt Disney World until we get new livers,’” Gravener said.
The family has come close to both children getting liver transplants.
Gravener said last February, Charmaine was on the operating table when the doctor had to stop the surgery.
“Tyler had just been released from the hospital because of what we though were gallstones. It turns out he had a norovirus which if she came down with, two weeks post-transplant it was up to 70 percent fatal,” she said.
In November, Tyler received a call but was second on the list.
“As it turns out, it went to the first family,” Gravener said.
Tyler and Charmaine are still waiting.
According to the U.S. Department of Health and Human Services, there are 3,337 people in New Jersey waiting for organs, of whom 222 are waiting for livers and 3,013 are waiting for kidneys.
Since her children are treated at DuPont Children’s Hospital in Delaware, they are among 15 waiting for livers out of 448 registered.
Gravener said most don’t realize the impact an organ donor can have on other lives.
According to Gravener, only 1 percent of deaths result in viable organs.
“There are not enough to go around,” she said.
“God forbid the accident has to happen the organs would make a huge impact on our lives. You don’t wish for anybody to have an accident, but if it does have to happen, their organs would change our lives and the lives of a lot of people waiting.”
Team Gravener has 45 to 50 people signed up to walk in the 3K and a few running in the 5K on Sunday, April 21, at the Philadelphia Museum of Art. Gravener said more are welcome to sign up for the walk.
The Dash for Organ and Tissue Donor Awareness includes a 3K walk, 5K run and a 10K run. All proceeds from the event go toward programs to educate the public on the importance of organ and tissue donation.
The 3K race starts at 11 a.m., the 5K starts at 9:25 a.m. and the 10K starts at 9:40 a.m.
To walk with Team Gravener or to make a donation to Dash, visit www.dash2013.kintera.org.
For more information about Team Gravener, visit their Facebook page at www.facebook.com/TeamGravener.
