Allison and Marcel

Propionic Acidemia

Allison is 14 years old and Marcel is 18 months old, both were diagnosed with Propionic Acidemia through newborn screening. Allison was hospitalized for a few days right after her diagnosis was confirmed for observation and then again a few weeks later because the doctors were a little too optimistic with her protein tolerance. Both are doing really well! They also have a sister, Mina, who is 3 years old and unaffected and 2 dogs, Freckles and Koda. 

Allison likes to play softball and soccer. She likes building with Lego and reading. She loves to draw. Allison plays saxophone in the school band and loves science classes. She is planning on going to college to become a veterinary technician. She loves her siblings and likes to play on the swings or trampoline with them. Allison likes to cook PA friendly meals for the family, mostly veggie tacos, and invite her grandparents over to share it with them. They are delicious! She measures and calculates the protein amounts in her food and makes and drinks her formula by herself every day. Last school year she expressed an interest in going to Washington DC on a school sponsored trip, she raised about half of the money she needed through fundraisers, so we decided to cover the other half so she could go. She had a great time and was very responsible with her diet. We enjoyed seeing all of her pictures and hearing stories from her trip. 

Marcel likes to play and hangout with his sisters. His development is on track and he learns more and more every day. His favorite toys are cars and balls. He is learning how to climb everything from his sister. 

We are in the process of changing doctors; their long-time doctor has retired so we are changing hospitals, doctors, and dieticians to St. Louis Children’s Hospital. I’m hoping we don’t have to change too much of our process. We have been blessed with the doctors we had and the health of our kids!

Cassie
beader1986@gmail.com
Missouri

From Summer/Fall 2022 Newsletter