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| (l to r) Riley, Peggy and Taylor Crowder. |
 wo
years ago this month, Peggy Crowder donated a kidney to her 14-year-old
daughter, Riley, who was born with a multicystic
dysplastic kidney, a developmental
condition in which her kidney had little to no normal functioning. At age
11, it was determined that Riley would need a kidney transplant. After Peggy
was deemed a match, she read everything she could get her hands on to prepare
for the transplant. But even the most informative medical journals and health-related
Web sites couldn't prepare the Crowders for the reality of going through a kidney transplant.
"Words on a page just can't describe what it's truly like
to see your child in pain and suffering," Peggy says. "You're scared; they're
scared. But you do everything you can to keep it together and stay positive."
Riley's
transplant was a success for both daughter and mother, and shortly
thereafter, Peggy, Riley and Taylor, Peggy's younger daughter, were asked
to share their story as part of the transplant
Experience Journal. Developed
by David DeMaso, MD, psychiatrist-in-chief, and Joseph
Gonzalez-Heydrich, MD, chief of Pyschopharmacology, Experience Journals are online resources
for families, offering collections of stories and personal experiences from
children, parents and health care providers about what it's like to have
certain medical conditions. The sites include written and videotaped content,
and let families contribute their own stories.
In addition to the transplant
site, there are Experience Journals for inflammatory
bowel disease,
pediatric
heart disease and childhood
depression. A fifth journal for overweight
children is also in the works.
"The Experience Journal project started with the hope that
computer technology could help us reach more families," says Gonzalez-Heydrich. "Together
with computer scientists from the Mitsubishi Electric Research Lab, Dr.
DeMaso and I came up with the idea of creating an online community to store
and collect families' wisdom
and experiences in getting their child through a particular illness. We also
made sure that the journals were designed to grow and change as families added
to them over time, hoping this would enable them to stay relevant, even as
medical treatments change."
For Peggy and her two girls, agreeing to take
part in the transplant Experience Journal was a no-brainer. "The thought
of our stories helping other families get through their own transplant
experiences was really gratifying," she says. "Riley
doesn't look sick. She's a freshman in high school, and serves as the coxswain
of the crew team. We thought it would be very hopeful for other families
to see a healthy kid that had survived kidney a transplant."
The Crowders' experiences
were recorded as part of the video portion of the transplant site, and
the first time Peggy saw the tape was very emotional. "It
was amazing to see Riley talking about her transplant experience to educate
others," she says. "And it was the same with Taylor. She had some very
profound things to say about what it was like being the younger sister
of someone going through a transplant. It allowed them both to feel like
their thoughts and opinions were important and helpful."
"If I had seen
something like this before going through our transplant, I know I would've
felt much better," Peggy
adds. "It's
hugely beneficial to see normal people, just like yourselves, going through
it."
To check out all of the Experience Journals, visit www.experiencejournal.com.
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