re: Generation

June 24, 2020

Zac and Jonathan: A brothers’ journey

Zac and Jonathan on dock

"What motivated us to adopt was recognizing the need. There were kids everywhere who needed a mommy and daddy and we could do that.” — Paul

Zac and Jonathan scribble on their respective notepads in a kitchen bustling with activity in a rural Virginia farmhouse, where they live with their five other siblings and their parents, Judi and Paul Jany. Theirs is a home filled with boisterous, youthful energy —and their story is as exceptional as their love.

Zac and Jonathan started their lives as orphans in eastern China. Although not biological siblings, they were both born with a rare metabolic illness called phenylketonuria (PKU) which prevents their bodies from adequately breaking down the amino acid phenylalanine (Phe) and can lead to severe developmental impairment and a host of lifelong cognitive disabilities.

PKU is treatable by adhering to a strict low-protein diet supplemented by a special formula, however, in China, adhering to this diet is exorbitantly expensive. Growing up in an orphanage, both boys faced malnourishment and had difficulty reaching developmental milestones. And, like for many with PKU, adoption was a distant possibility.

“Within their orphanage, the director decides which conditions are ‘adoptable,” explains Judi. PKU had not yet made the list, but the need was critical. At 14, children in the Chinese orphanage system “age out” and kids find themselves in low wage jobs or living on the streets. These harsh realities were even more untenable for Zac and Jonathan. To help them overcome the challenges ahead, they needed an advocate — and an abundance of love. Enter, the Jany family.

After giving birth to four biological children, the Janys’ faith and desire to help other children in need led them to learn about opportunities to help children born in China without families. They would soon add three more children to their own family.

Their first was Joel, whose loving addition created unbridled enthusiasm for adoption throughout the Jany family. They soon learned about PKU from Zac’s adoption page.  After researching the condition, they felt confident they could give Zac the environment he needed to live a healthy life and, in November of 2014, the Janys brought three-year-old Zac into their family.

“Zac was only the second child to be adopted from China with PKU,” — Paul

In recent years, advocacy groups have helped raise awareness about the needs of children with PKU, making adoption more of a possibility.

Figuring out nutrition protocols was coupled with the fact that Zac had intense physical needs. At three years old, he still mostly crawled, drank from a bottle and wore diapers. However, once on a proper diet, his physical condition improved mightily. Zac developed into a young athlete and now runs 5K road races.

Jany family portrait

"We try to not think of PKU in a negative way. We try to celebrate it, and to help all our children understand that it's not a negative.” — Judi

As the family fell in love with Zac, they began to better understand PKU, and the need to help others with the disorder. Judi had started advocating for PKU adoptions, and while advocating for Jonathan, found no one stepping up to adopt him. Again, the Janys heeded the call, and three-and-a-half-year-old Jonathan arrived at his new home in January of 2015.

Jonathan’s challenges were different than Zac’s. He struggled with language, socialization and sensory overload. His family made adjustments to support his health and wellbeing and to build better relationships between him and his siblings. Jonathan has a strong spirit and rose to overcome this adversity. In recent years, he’s excelled in school and improved his social skills in leaps and bounds. “The experts were amazed by Jonathan,” says Paul. “They thought he would never live independently. He proved everyone wrong on that. He is healthy and very smart.”

While still challenging, managing PKU has gotten less stressful over time for the Jany family. And as they gather at their giant table, Zac and Jonathan may not eat the same foods as their siblings, but they make up for it in shared stories, laughter, fishing tales, and adventures.

Jany family fishing off dock

Paul and Judi inspire us every day as they continue to advocate for adoption of PKU-affected children. We aim to make it even easier for parents like the Janys to raise children with PKU by creating a new class of gene therapy that may allow people of all ages who are currently challenged with PKU to have more normal diets and avoid any neurocognitive issues from the disease. Further, with the potential of our capsid-free manufacturing process to scale to millions of doses, we envision access for treatment for more Zacs, more Jonathans, more children everywhere, all over the world.

“So much more can be done. It's a matter of advocating for those who need a mommy or daddy, and also reaching out to those who can support adoption in other ways.”  — Paul

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