No Family Should Climb the Athymia Mountain Alone
A congenital athymia diagnosis can make it feel as though the ground has disappeared beneath your feet. Suddenly, your family is standing at the base of a mountain you never expected to climb. You’re carrying fear, medical terminology, impossible decisions, and questions that do not always have simple answers. We are here to help you take the next step. The Mountain Guides are a group of parents at the heart of the Luca Rising Foundation. Each is navigating their own family’s journey with congenital athymia whether making their way through treatment, transplant, immune reconstitution, isolation, or life after isolation. Every path is different, but each parent understands what it feels like to face this diagnosis. Together, they offer something that cannot be found in a medical chart or informational brochure: The comfort of being understood.
Parents Helping Parents
Our Mountain Guides are not doctors, and they cannot provide medical advice. They are parents who have lived through the fear, exhaustion, uncertainty, and fierce hope that come with raising a child with congenital athymia. They understand the late night questions. The overwhelming appointments. The isolation precautions that affect the entire family. The waiting, the setbacks, the milestones, and the complicated emotions that can exist alongside even the happiest news.
Mountain Guides use their lived experiences to offer compassionate peer support, practical encouragement, and connection. They can help families feel less alone while they begin to understand the road ahead.
Support and Understanding
Depending on their experience, a Mountain Guide may be able to offer support related to:
- Receiving and processing a congenital athymia diagnosis
- Preparing for thymus transplantation
- Navigating prolonged medical isolation
- Managing hospital stays and frequent appointments
- Supporting siblings and other family members
- Coping with fear, grief, uncertainty, and caregiver exhaustion
- Celebrating immune milestones and progress
- Adjusting to life after isolation
- Finding community within the Athymia family
One Shared Mountain
Some of our Mountain Guides are still actively climbing. Some have reached places they once could not imagine. Some have encountered unexpected turns, heartbreaking losses, or paths that look very different from the journey they originally hoped for. Every one of their stories matters. By bringing together parents with a variety of experiences, the Luca Rising Foundation hopes to help each family find someone whose journey feels familiar, someone who can say, honestly and gently: “We have been there too.”
No two children or journeys are exactly alike. Mountain Guides will never compare experiences or promise a specific outcome. They are here to listen without judgment, share what helped their own families, and remind parents that they do not have to carry everything by themselves.
Meet the Mountain guides
Jessica
Jessica
Jessica
Jessica is Luca’s mom, and one of our Mountain Guides. After navigating Luca’s congenital athymia diagnosis, years of isolation, and his thymus transplant journey, she understands that this mountain is not only medical—it is deeply emotional.
She is especially passionate about supporting the mental health of parents and caregivers as they
Jessica is Luca’s mom, and one of our Mountain Guides. After navigating Luca’s congenital athymia diagnosis, years of isolation, and his thymus transplant journey, she understands that this mountain is not only medical—it is deeply emotional.
She is especially passionate about supporting the mental health of parents and caregivers as they move through fear, grief, uncertainty, exhaustion, and life-changing decisions. She hopes to create a space where families can speak honestly, feel understood, and receive support from someone who has stood in many of the same difficult places. Her goal is to help families navigate each step of the climb while reminding them that they do not have to carry the emotional weight of this journey alone.
Chelsy
Jessica
Jessica
Chelsy is Gabe’s mom and one of our Mountain Guides. After spending seven years in medical isolation while caring for an incredibly medically complex child, she understands the endurance, sacrifice, and constant learning this journey demands.
Chelsy is especially passionate about the educational side of congenital athymia. She helps famili
Chelsy is Gabe’s mom and one of our Mountain Guides. After spending seven years in medical isolation while caring for an incredibly medically complex child, she understands the endurance, sacrifice, and constant learning this journey demands.
Chelsy is especially passionate about the educational side of congenital athymia. She helps families make sense of complicated medical information, prepare meaningful questions, and feel more confident advocating for their children. With years of lived experience behind her, Chelsy brings both knowledge and compassion to the climb, helping families feel informed, empowered, and less alone as they navigate their own athymia mountain.
Ariana
Jessica
Marilyn
Ariana is Juliana’s mom and one of our Mountain Guides. After spending nearly five years in medical isolation with her daughter, she understands the daily logistics, constant planning, and quiet resilience required to build a family life around congenital athymia.
Ariana has become a trailblazer in navigating the practical realities of iso
Ariana is Juliana’s mom and one of our Mountain Guides. After spending nearly five years in medical isolation with her daughter, she understands the daily logistics, constant planning, and quiet resilience required to build a family life around congenital athymia.
Ariana has become a trailblazer in navigating the practical realities of isolation—from managing household routines and family relationships to balancing medical precautions with meaningful experiences. She brings invaluable insight into the countless details families must consider, helping others find workable solutions, adapt with confidence, and create a life that still holds connection, joy, and purpose while climbing the athymia mountain.
Marilyn
Jessica
Marilyn
Marilyn is Syanna’s mom and one of our Mountain Guides. As one of the newer members of the athymia mountain guides community, she brings a fresh perspective, a vibrant spirit, and an incredible gift for helping families feel connected.
With her background as a teacher and her naturally bubbly personality, Marilyn specializes in building re
Marilyn is Syanna’s mom and one of our Mountain Guides. As one of the newer members of the athymia mountain guides community, she brings a fresh perspective, a vibrant spirit, and an incredible gift for helping families feel connected.
With her background as a teacher and her naturally bubbly personality, Marilyn specializes in building relationships, spreading joy, and helping families adjust to the realities of life with congenital athymia. She understands that finding a new balance takes time, and she reminds others that a different kind of normal can still be meaningful, joyful, and full of connection. Marilyn helps families embrace their new rhythm while showing them they are never navigating it alone.