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Piermont infant battling rare kidney disease; fundraiser planned

PIERMONT — The family of a three-month old girl battling a rare kidney disease is appealing to the public to help raise money for her care, and to help find a cure.

Ada May Laauwe, born Jan. 16, daughter of Kristen Coburn and William Laauwe, has been diagnosed with Autosomal Recessive Polycystic Kidney Disease, or ARPKD.

To cover the costs of her care at Boston Children’s Hospital, as well as the costs associated with her parents traveling to and staying in Boston, friends and family have organized a spaghetti dinner and silent auction to be held May 10 at the Warren Elementary School.
The fundraiser begins at 4:30 p.m.; tickets are $7 for adults and $5 for children ages 6 to 12, while those under 5 get in free. Donations can be made by mail to the Ada May Laauwe Fund, in care of Woodsville Guaranty Savings Bank, P.O. Box 86, Piermont 03779.
According to the Kirkwood, Pa.-based ARPKD/CHF Alliance, which is dedicated to serving patients who have ARPKD or Congenital Hepatic Fibrosis, the diseases have a genetic origin.

The alliance said the prognosis, “especially for those who survive the newborn period is far less bleak than once thought.” Infants with ARPKD who survive mechanical ventilation “have a good chance of survival,” with those who survive the neo-natal period having a five-year survival rate of between 80 percent and 95 percent, with survival well into adulthood being “common,” said the alliance.
Approximately a third of the ARPKD population will need dialysis or kidney transplant by 10 years of age, the alliance said, with a family member of Ada May noting in an e-mail that the baby has already had both kidneys removed, but is doing well and is on dialysis pending a transplant.

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