News from Muscatine Journal (Iowa, USA) Oct. 20, 2007

Couple strives to make child's life a happy one, despite rare disease that threatens their baby's life
By Cynthia Beaudette of the Muscatine Journal
MUSCATINE, Iowa — After losing their infant son, Connor, within hours of his birth in April 2006, Melissa and Chris Ander-son were relieved to near the due date of their second baby with an absence of complications.
The pregnancy had been closely monitored, Melissa said, because of the concerns brought about after their son’s birth.
“We thought everything was fine,” recalled Melissa, 27.
Melissa said her daughter, Ainsley Anderson, appeared to be well after she was born six months ago.
But when Ainsley was approximately 12 hours old, she began experiencing seizures.
She was diagnosed with a peroxisomal disorder called D-bifunctional protein deficiency disorder, an incurable, rare genetic disorder affecting one in 100,000 children.
Today, the Andersons strive to fill Ainsley’s life with joy and love.
“We can’t be depressed all the time,” said Melissa. “That would just rub off on our daughter and we want her to have the best life possible.”
Area residents will have the opportunity to join the Ander-sons in that quest.
Next Saturday, Oct. 27, the community is invited to a benefit for Ainsley with proceeds going toward medical expenses and possible clinical trials.
The event will be held at Whispering Pines Clubhouse in Muscatine which will include an auction, raffle and a dinner.
The Anderson family said her disorder makes her susceptible to respiratory problems, and they ask that people who suspect they may have a cold or the flu to take necessary precautions.
Now that Ainsley is home, her maternal grandmother, Vickey Garret, and great-grandmother Yvonne Curry care for her when Melissa and Chris are working.
Melissa is a project accountant with Stanley Consultants Inc., and Chris works at Jim Miller Nissan and Subaru in Cedar Rapids.
Chris’ mother Teresa Ander-son also cares for Ainsley when she has a day off from work.
Melissa said she and her husband faced the loss of their son and Ainsley’s health complications with a positive attitude.
She cherishes the moments she and Chris shared with little Connor.
“We had time to hold him and get him baptized and blessed,” she said.
Melissa said she and her husband are fairly certain Connor died of the same disorder.
“There’s not a lot of information out there,” said Melissa. “We found two other cases of this on the Internet.”
Ainsley’s prognosis isn’t certain.
“They really can’t give us a time frame,” said Melissa.
Melissa said D-bifunctional protein deficiency disorder is a progressive disease and she has been told her daughter could live to be 2½ years old.
“We take it day by day,” said Melissa. “Ainsley’s a joy to have, and I think we’ll have her around longer than the doctors expect.”
Reporter contact information
Cynthia Beaudette 563-262-0527
cynthia.beaudette@muscatinejournal.com
 

From: http://www.muscatinejournal.com/articles/2007/10/20/news/doc471967d927948272875330.txt

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