June 10, 2025

Navigating Childhood With Courage and Care: Cybil and Ava’s Caregiving Story

Caregiver Experience Caregiver Stories

All Topics

Share Post

• Share article to Facebook
• Share article to LinkedIn

We extend our heartfelt thanks to Cybil and Ava for their openness and willingness to share their experiences. We hope that by sharing their journey, others who find themselves in similar situations can find inspiration, support, and encouragement to build their own networks of care and connection.

Their days are busy, their challenges are real—but the love between Cybil and her 13-year-old daughter, Ava, is undeniable. Cybil is Ava’s primary caregiver, and her caregiving story shines with extraordinary strength.

“When I see her thrive, nothing could make me feel better than that. It’s the greatest feeling in the world,” Cybil said.

When Ava began experiencing mobility issues as a young child, the family explored genetic testing to better understand what was happening. Cybil remembers the uncertainty of that time clearly. “Her condition is rare so there’s not much out there. There are definitely times when it’s hard because we just don’t know much.”

After a long road of concerning symptoms, Ava was diagnosed with Infantile Ascending Hereditary Spastic Paralysis (IAHSP) with an ALS2 gene mutation, a disorder similar to ALS.

“It started with her lower legs, and it moved up her body to her arms. She has trouble swallowing and eating. She’s just going to continue to get weaker. They hope that she might plateau in a couple of years,” Cybil said.

Since that life-changing diagnosis, Cybil’s role as a mother has evolved into something more demanding and deeply personal. Each day is carefully structured around Ava’s care, from therapies and mobility support to managing appointments and providing emotional encouragement. While Ava’s diagnosis brought clarity, it also confirmed a new reality—one that requires patience, strength, and unwavering love. 

Cybil and Ava’s Caregiving Routine

Cybil supports Ava through many activities of daily living (ADLs). She gets her up in the morning, carries her to the couch where they do stretching exercises, puts on her orthotics, and helps Ava into her wheelchair before school. Cybil helps her dress, brushes her teeth, helps her bathe, and assists with eating.

“It’s hard to identify as a caregiver, even just these past couple of years with [Ava] getting weaker and me just having to step in and do so much more for her. I’ve really started to feel like a caregiver,” Cybil said.

Cybil takes Ava to school each morning and transports her to various appointments throughout the week. Ava attends horse therapy, swimming, physical therapy, and more. Then it’s back home to finish homework, eat dinner with Ava’s dad and older sister, and get ready for bed. In addition to caring for Ava, Cybil works full-time, often finding opportunities to finish her work day before Ava wakes up or after she goes to bed. 

“Many nights I have to move her because she can’t really flip over herself. So, it’s around the clock,” Cybil said.

It’s a rhythm the family has learned together. While no two days look exactly the same, what remains constant is Cybil’s devotion and Ava’s resilience. Still, even the strongest caregivers need support—and that’s where the right help can make all the difference.

Caregiving Support with Careforth

Before connecting with Careforth, Cybil says she didn’t have much support. She was working full-time and managing Ava’s needs and schedule as always, but often at the expense of her own mental and physical health.

“For so long I thought, ‘Oh, I can do it, I can do it.’ And then I think I just kind of started breaking down and I finally realized help is what I needed. Careforth is the best support I’ve had, period,” Cybil said.

That’s where Careforth Care Coach Vivian Lins came in. From the beginning, she encouraged Cybil to find little moments for herself. Vivian sends her meditation and breathing exercises, checks in on Cybil and Ava’s mental health, and video calls with them on a monthly basis to ensure they have the support they need.

“What makes our relationship strong and trusting is the fact that Cybil knows I’m here for the happy moments and the sad moments,” Vivian said. “Her happiness makes me happy too. Nothing is too small to be celebrated. Sometimes we laugh together but sometimes she can cry, and she knows I’m listening and offering emotional support.”

Ava relies on Cybil to move her everywhere: to and from bed, around the house, and into her wheelchair. Because of this, Cybil prioritizes her physical health and strength so she can provide that support to her 13-year-old daughter.

“I have always loved to work out. I was always a runner. But these past couple of years I started lifting weights and I have never been stronger, and I’ve never felt better,” Cybil said. “Since working with Careforth, I’ve just realized that I need time for myself, and it’s just been incredible—the change, the way I feel, and the way I can better care for Ava.”

Cybil gets the connection, support, and coaching she needs to care for Ava, despite having a remote relationship with Vivian. Vivian cheers them on, talks through any fears or stressors Cybil has, and helps brainstorm coping strategies or resources they might find valuable.

“[Vivian is] always there. She is a real person on the other end of the line! She’s always positive, which is what I need. It’s so easy and helpful to talk to her and makes me feel comfortable,” Cybil said.

Thriving Through Uncertainty

Despite the challenges that come with her diagnosis, Ava lives an inspiring, fulfilling life, in part thanks to the level of care Cybil and her husband provide. Ava became a published author last year with her book, “A Ferret Named Chase.” With patience and focus, Ava types using only one finger—a process that makes her publishing achievement even more extraordinary.

“Ava has always liked writing. It’s one of her outlets, one of the things that she can really do. She just got it in her mind that she wanted to publish something,” Cybil said.

For Cybil, watching her daughter chase her goals is both grounding and motivating. With the right support around them, and Vivian cheerleading from the sidelines, they’ve built a life rooted in strength, care, and love. Their journey is far from easy, but it’s filled with meaning—and a reminder that even in uncertainty, there is room for hope, growth, and moments of joy. 

“I just feel like that’s my purpose in life now, and I just want to make her happy and give her the best life she can have. My motivation is her.”

Careforth Supports Family Caregivers

At Careforth, we strive to provide the resources and connections that ensure caregivers feel supported at every turn in their caregiving journey. Visit the How We Help page on our site to learn more about how Careforth supports caregivers, or contact us for more information.