From Star-Telegram, Fort Worth, Texas, BY FAYE REEDER
It’s time for the 14th annual Walk for PKD, the signature fundraising and public awareness event for the PKD Foundation. The North Texas Walk is Oct. 22 in Southlake Town Square, where scores of walkers, patients, friends and family will be among the 50 cities nationwide participating in similar events.
“We're calling our event The Great Pumpkin Party for PKD. Halloween costumes are encouraged, and we will have costume contests for adults, kids and dogs,” said Sally Wilson, coordinator for the PKD Foundation North Texas chapter.
Polycystic kidney disease is “one of the most common but least well-known kidney diseases. PKD causes cysts to grow in the kidneys, eventually leading to kidney failure. Transplantation or dialysis are the only treatments. A recessive form of PKD also affects newborns, many of whom die during their first year of life. Our goal is to find an effective drug to treat PKD early in the disease process,” Wilson said.
Whitley Terry, 1, of Shreveport has the disease and is believed to be the only child from her area to have survived longer than one year. Whitley’s family and friends have formed a walk team — Whitley’s Warriors — and will be special guests at the walk as they raise money for research to find a treatment or cure for this terrible disease.
Registration opens at 7 a.m. with the 5K starting at 8 a.m., the Penny Kids Dash at 9 a.m. and the walk starting at 9:30 a.m. Learn how to help and participate at walkforpkd.org.
“We're calling our event The Great Pumpkin Party for PKD. Halloween costumes are encouraged, and we will have costume contests for adults, kids and dogs,” said Sally Wilson, coordinator for the PKD Foundation North Texas chapter.
Polycystic kidney disease is “one of the most common but least well-known kidney diseases. PKD causes cysts to grow in the kidneys, eventually leading to kidney failure. Transplantation or dialysis are the only treatments. A recessive form of PKD also affects newborns, many of whom die during their first year of life. Our goal is to find an effective drug to treat PKD early in the disease process,” Wilson said.
Whitley Terry, 1, of Shreveport has the disease and is believed to be the only child from her area to have survived longer than one year. Whitley’s family and friends have formed a walk team — Whitley’s Warriors — and will be special guests at the walk as they raise money for research to find a treatment or cure for this terrible disease.
Registration opens at 7 a.m. with the 5K starting at 8 a.m., the Penny Kids Dash at 9 a.m. and the walk starting at 9:30 a.m. Learn how to help and participate at walkforpkd.org.
Living with PKD
From KSAT, Channel 12 ABC Affiliate, San Antonio, Texas
PGD allows doctors to know which embryo might carry genetic diseases
In vitro fertilization is no longer just for parents who have a hard time conceiving; it is now being used by parents who have a high likelihood of passing on a potentially debilitating genetic disease to their child. It’s a process called preimplantation genetic diagnosis. Doctors are testing for genetic diseases well before conception and giving parents peace of mind.
Twenty-two weeks into Jennifer St. Aubin’s pregnancy, she and her husband Peter received some very tough news. Their baby was diagnosed with polycystic kidney disease, or PKD.
“Nobody knew how serious it was going to be until she was actually born,” Jennifer told Ivanhoe.
Their daughter, Sophie, was born prematurely 15 weeks later. Due to PKD, her lungs had never fully developed. She died twelve hours after delivery.
“We were mourning Sophie, but we were also mourning the potential of never having a family,” detailed Jennifer.
That’s because Jennifer and Peter soon learned they were both carriers of the PKD gene. Even though they didn’t have the disease, they had a 25 percent likelihood of having another child with PKD.
Jennifer said, “If the IVF and the genetic testing weren’t in existence, I don’t think Pete and I would have chosen to have future children because of the risk of them being sick.”
The couple turned to Northwestern Medicine’s OBGYN Eve Feinberg, M.D., an expert in pre-implantation genetic diagnosis, or PGD.
“We then get a read out from the genetic testing laboratory that literally says embryo one unaffected, embryo two carrier, embryo three unaffected,” Dr. Feinberg told Ivanhoe.
The St. Aubins opted for in vitro fertilization and had 20 embryos tested. Nine of them had PKD. Dr. Feinberg implanted one of the healthy embryos and …
“We are pregnant 26 weeks now with a girl,” said Jennifer.
A baby girl that doctors fully expect will be healthy.
Jennifer is due in October. A single attempt of in vitro fertilization using PGD can cost between $18,000-$20,000.
Gift of Life
Patrick Saunders was diagnosed with Polycystic Kidney Disease before he was even born. The disease causes cysts to form in the kidneys and is usually hereditary. Saunders' first kidney was removed at the age of two. His second has been failing since the 7th grade. It currently functions at 22 percent, just two percent higher than required for a transplant. Enter mom.
"I feel like it's a blessing to be the one who, you know, donates a kidney, especially as a mother," said Deborah Saunders. "You gave your son life and to be able to do it again, it's truly a blessing and I think any mother given the chance would do it."
The knowledge his mother would be giving him a new lease on life elated Patrick.
"I can't be more happy that my mom's going to give me a kidney. She stepped up without getting asked to," he said.
Patrick explained that many of his friends volunteered to donate as well and they might not be off the hook. Transplanted kidneys only last 30 to 35 years at most, meaning he will likely need another.
In preparation for the procedure, the Saunders' family has been raising money to help cover the costs of the time off for both parents, as well as hotel bills and medications. Insurance will take care of the transplant itself.
They're not alone. Upon hearing their story, the owners of Food Fusion Bar & Grill (formerly Russell's Steakhouse) in Endicott donated space to hold a fundraiser on Sunday.
"It's for a good cause," explained co-owner Elena Honovich. "We really need more good people around here."
The fundraiser will take place from 1:00 to 6:00 p.m. Sunday afternoon at the restaurant, featuring food, a cash bar, and music. It's open to the public.
While the transplant date hasn't been set yet, Deborah is already looking forward to a healthier future.
"It will be a blessing to watch him every day," Deborah said.
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