“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”
2 Corinthians 12:9
Ever since the day he was born Isaac had to fight to survive. Hospital staff called Isaac the ‘mystery baby’ because they couldn’t explain his failure to thrive.
As his parents, Camilla and Aran, recall: “He was lifeless like a ragdoll, not curled up like a typical newborn. We thought he was dying.”
Finally, after a battery of tests, doctors determined that Isaac has a genetic metabolic disorder called Cobalamin C disease. This condition prevents his body from absorbing vitamin B-12, the essential element that nourishes the nervous system.
Camilla and Aran learned that if their son survived, he would live with seizures, blindness, and significant cognitive and developmental delays.
By God’s grace, Isaac did survive. But his family’s journey has proven arduous and lonely at times. For Camilla, who was twenty-one years old when Isaac was born, raising a child with profound disabilities has made social connection more difficult.
For a time, Camilla felt overcome with bitterness because her experience as a new mom was vastly different than her friends. She isolated herself and eventually retreated into a world of loneliness.
“My friends’ babies met all the milestones, and Isaac didn’t. The dynamics and relationships changed, and I felt that my family wasn’t accepted anymore.”
As Camilla withdrew, Aran recalls the grief he experienced, “realizing that Isaac wasn’t ‘typical’ and wouldn’t have a normal life. He wouldn’t have school friends, play sports, or be invited to birthday parties. That had a profound effect on me because I would miss out on those experiences as well.”
The Path to Healing
Now raising two children, Aran and Camilla continued to struggle. Isaac’s condition requires constant intensive care and monitoring. For this reason, Camilla got angry when Aran signed the family up to attend a Joni and Friends Family Retreat—she couldn’t imagine coping with the challenges of the trip.
Despite Camilla’s reluctance, she quickly found peace and joy from the day her family arrived at Family Retreat. She and Aran saw the staff and volunteers tenderly care for Isaac and welcome their whole family—including Isaac’s little brother, Noah.
Because of this they found much-needed deep rest.
As Camilla said, “It’s the first time I felt accepted and normal, and I wasn’t trying to hide anymore.”
Beyond respite, Family Retreat provided deep connection and healing for Isaac’s family. Aran remembers hearing a story about another dad’s adult son with a disability. This dad described how, for thirty-nine years he prayed for God to heal his son. Then God helped this father see the truth—that he was the one in need of healing. From that time, this father accepted his son in a new way, disability and all.
“That hit Camilla and me really hard,” says Aran.
For Noah, Family Retreat provided an opportunity to bond with other siblings of children with disabilities.
Camilla caught glimpses of joy for Noah as he bonded with peers who understand what it’s like to live with disability in the home; they also got to observe one another navigating their family dynamics.
Camilla reflected that her son “has the privilege of growing up with a perspective that his friends won’t—to be inclusive and to stand up for those who don’t have a voice.”
Your support provides families like Isaac’s the chance to know they are accepted and celebrated in the body of Christ.
At every Family Retreat, families living with disability experience respite, joy, and true belonging.