“When I got the call, I couldn’t process what I was hearing. It was so hard.”
Lacy thinks back to the moment when she learned that her second child, a baby girl named Aspen, was diagnosed with Phenylketonuria (PKU).
PKU is a rare inherited metabolic disorder that means a person must avoid foods naturally high in protein (such as meat, eggs, and even bread). This is done to avoid a build-up of a substance known as phenylalanine in the brain, which is harmful to people with PKU.
Lacy, her husband Darryl, Aspen (now 2 years old), and their other child, Finn (6), live about an hour from New Orleans, Louisiana. Caring for a little one with PKU can be tough, as new parents and families like Lacy’s will know.
“You can’t wing it,” Lacy says, since the diet must be closely monitored to support the baby’s proper growth and development. Darryl and even brother Finn are involved in Aspen’s care, looking after her to see she has the right foods and consumes her PKU-appropriate protein. As part of the PKU diet plan set out by her healthcare professional, Aspen gets essential nutriends and protein by drinking her PKU formula.
“It’s almost like Darryl, Finn, and I also have PKU for the first five years [of Aspen’s life],” shares Lacy. “PKU is a family thing.”
Lacy and the family are especially focused on making sure Aspen gets the proper amount of formula to help her grow and develop. From birth up until now, Aspen drank Nutricia’s PKU Periflex® Early Years, which her metabolic healthcare team recommneded. This formula is complete with DHA & ARA for brain development and prebiotics, which support immune and digestive health.
Learn more about Early Years metabolic infant formulas here.
Aspen now drinks PKU Periflex Junior Plus as her next-stage formula. (Learn more about Periflex Junior Plus here.)
“I try not to make drinking formula a job for Aspen. I leave it out for her and let her have it in her own time.” This is one of Lacy’s tips as far as encouraging a positive relationship between children and PKU formula.
PKU can feel isolating for Lacy and the family since not many other people in their community know what PKU is or how to care for Aspen. So, to connect to other parents with children with PKU, Lacy turned to social media.
She connected with families all over the world, from Ireland to Canada, and she found a fellow mom named Kellie from Connecticut. Lacy and Kellie bonded over the realities of daily life with a new baby with PKU. According to Lacy, Kellie has been “a life saver.”
“We’ve overcome a lot,” shares Lacy, thinking about how she and her family have learned more day-by-day on how to best nurture Aspen. She knows what the high’s and low’s are like, and that’s why she wants to be involved with the PKU community. If she notices a new parent on one of the Facebook support groups, she immediately reaches out to them via private messenger.
“If I can help that person through even one minute, I will. I’ll write to them.”
It’s the spirit of “in this together” that has helped Lacy and her family to where they are today and what she hopes to see throughout the broader PKU community.
We do our best to provide support and education for families like Lacy’s. Take a look at our Learning Center page for disorder-specific videos, booklets, and more. We’re here for you and your family.
If you are a new parent and are interested in learning more about the metabolic formula Aspen used as an infant, see more on Early Years formulas here or ask your metabolic healthcare team.
PKU Periflex Early Years and PKU Periflex Junior Plus are medical foods for the dietary management of Phenylketonuria and must be used under medical supervision.
This blog is brought to you by Nutricia North America.
© Nutricia North America 2020