The purpose for keeping this website is to help us communicate what life is like for our children who are living with Propionic Acidemia (PA) and journal their ongoing struggles and successes. It is our hope to educate everyone who wants to know more, increase awareness, and raise money for research to hopefully one day find a cure for this disease that takes the lives of many of its young victims.
The journey began for Allison Nov 2005 & for Gwen Feb 2006 only hours after their births. Both girls were discharged from the hospital of their birth with vital signs only slightly outside normal standards. Luckily for Allison, Ohio had recently added PA to the Expanded Newborn Screening panel. Her parents soon learned their daughter had PA & their lives would change forever. Allison spent a week in children's hospital while her parents learned how to care for her at home. This was the first pre-mortem PA diagnosis in the hospital's history. Gwen's beginning was much different, in that she became very ill at only 2 days old & was admitted to children's hospital NICU due to catastrophic illnesses. Because Gwen's gene mutation is so severe, her onset came on more quickly than Allison's. Luckily for Gwen, she was the 3rd child in 3 months to be diagnosed with PA at our children's hospital, so while her newborn screening results were still days away from being reported, the doctors knew immediately from her symptoms that she should be tested for PA. Even then, it was nothing short of a miracle that she survived her first week. Please look around the site to learn more about the girls' history & see their photos! Thanks to your help, we have donated nearly $200,000 to the PA Foundation to fund research toward finding a cure for PA! We know a cure is out there and we want to find it in our lifetimes to ensure that other children with this rare disorder will be able to live long and healthy lives. You can make an online, tax deductible donation through Google Checkout below. Thank You for visiting!