I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on September 23, 2010, 07:53:29 AM
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'You want her to have a normal life'
Written by John Kovach
Thursday, 23 September 2010 09:40
Daphne Main just wants her daughter, Avery Toth, to have a normal life.
“She’s so beautiful and so normal and she swims and does ballet,” Main said.
Which is why people are surprised to learn that 4-year-old Avery has a disease that is destroying her kidneys.
After doctors noticed an irregularity in Avery’s kidneys in an ultrasound the day before she was born, a regimen of regular monitoring began. Every six months, Main took her daughter to Yale, and doctors advised her to continue to bring her back every six months.
Until May 2009, when several doctors entered the room and told Main her daughter had polycystic kidney disease.
“All of a sudden you feel like you’ve been sucker-punched,” Main said.
“That day I didn’t have my husband with me because we thought it would be a routine visit,” she added.
Neither Main nor her husband, John Toth, had heard of the disease, but they learned it was hereditary. They were told to get genetic testing before having another child. Unbeknownst to them Main was already carrying Shea, who has shown no signs of the disorder in the six months since she was born.
“She might have a mutation,” Main said of Avery.
Something a doctor said left a mark on Main.
“It almost made me mad,” she admits. “He said she will have a normal childhood. When you carry a child and bear her and raise her, you don’t want her to have a normal childhood, you want her to have a normal life.”
Main carried Avery to the car “crying, shaking, confused, shocked,” she recalled.
About a month later, Main reached out to the PKD Foundation and embarked on a crusade she hopes results in a cure for polycystic kidney disease.
On Oct. 9, Avery’s Allies, her team, will participate in the Walk for a Cure at Hubbard Park in Meriden.
Last year, shortly after reaching out to the foundation, Main joined the same walk, raising $6,000.
Main has established a Facebook page for Avery’s Allies and an e-mail address, averysallies@yahoo.com .
“I told my family and friends, and everyone jumped,” Main said. “They wanted to give kidneys. She doesn’t need that yet.”
But no one knows how fast the disease will progress.
Avery has multiple cysts on both kidneys. Polycystic kidney disease can migrate to the liver and other organs.
She may need dialysis. She may need multiple kidney transplants.
“Kidneys last 30 years,” Main said. “If she’s 10 years old when she gets her first, she may need a second when she’s 40, if all goes well.”
Main also saved her second daughter’s cord blood in the hopes for a cure.
“If they find a cure tomorrow, it will be 11 years before it’s through the FDA,” Main said.
More events are being planned, all striving toward Main’s ultimate goal.
“I want Avery to get the same life everybody else has a chance at.”
http://www.acorn-online.com/joomla15/stratfordstar/news/localnews/71335-you-want-her-to-have-a-normal-life.html