Meet James!

Written By Amanda Anderson

💚 Celebrating James: Strength, Adaptation, and Cerebral Palsy Awareness

October is not only about pumpkin patches and cooler weather — it’s also a month for reflection and awareness. This month, Sharewear proudly shines a light on Cerebral Palsy Awareness and the incredible families navigating medically complex journeys with courage and love.

Today, we’re honored to share James’s story — a brave little boy whose strength and joy have inspired everyone who knows him.

💙 James’s Story

At their 20-week anatomy scan, James’s parents received news that changed everything. Doctors discovered that their baby had a complex congenital heart defect, but couldn’t give many details at the time. After meeting with maternal-fetal medicine, they learned James’s diagnosis: complex D-TGA (dextro-transposition of the great arteries) with additional cardiac complications including ASD, VSDs, and a non-apex forming left ventricle.

James was born on August 20 and amazed everyone from his very first breath. Shortly after birth, he underwent a cardiac catheterization to help his heart and lungs function properly. During recovery, he suffered a right hemi stroke, leading to left hemiparesis cerebral palsy. Two weeks later, his family brought him home under palliative care — balancing therapy, clinic visits, and hope.

On June 1, 2023, James underwent a full heart repair. He continues to amaze everyone with his resilience, curiosity, and joy. His family describes him as thriving — adapting to his world with endless determination and a smile that says, “I got this.”

Learn more about Cerebral Palsy and early intervention through the CDC’s resources for families navigating similar diagnoses.

💬 A Conversation with James’s Mom

We asked James’s mom to share more about his personality, the lessons they’ve learned, and how they continue to find joy through every challenge.

1. What are some things your child loves doing that bring them the most joy, and how do you adapt activities to make sure they can fully participate?

James absolutely loves being with his friends, exploring the outdoors, and adventuring to new parks. Before we go anywhere, we always take time to scout out the area to be sure it’s accessible for him and has comfortable spots to take a break when he needs it. We also look for spaces that offer just enough “risky play”. The kind that helps him build confidence and helps all of us remember he can, if he's allowed to try.

When it comes to group activities, we make sure to bring along his essentials — larger crayons, adaptive scissors, and other tools that help him participate fully and feel included in every moment.

2. What’s one misconception about cerebral palsy you wish more people understood or stopped saying?

Oh, this is such a great question. For us, the biggest misconception is when people say things like, “Oh, therapy will work it out of him,” as if cerebral palsy is something that needs to be fixed — or that James is broken or missing something. He’s not. No matter where someone falls on the spectrum, they are whole. Their normal just looks different, and that’s okay.

As James grows, I hope he’ll be able to share how he sees himself and how he identifies. What I’ve learned from him — and from others in the CP community — is that children and adults with cerebral palsy have so much to offer this world. We just have to listen, make space for their voices, and see them for who they truly are.

For additional information and support, visit the Cerebral Palsy Foundation and the United Cerebral Palsy organization, both dedicated to inclusion, advocacy, and accessibility.

3. How has connecting with other parents or organizations impacted your journey — and what advice would you give to families who are just receiving a diagnosis?

Connecting with other parents and organizations has truly changed our journey. Finding resources in your community is one of the most important things you can do — not just for your child, but for yourself. Everyone wants a village, but not everyone realizes they have to be a villager too.

This medically complex village is strong. It’s made up of people who show up with love, understanding, and acceptance and that's because they get it. There’s nothing like being surrounded by those who understand the therapies, appointments, and emotions that come with each diagnosis.

Families can find local and national resources through the Family Support Network or Parent to Parent USA — communities built to support parents through the emotional and practical aspects of raising a child with medical needs.

4. In what ways do you advocate for your child at school, in the community, or within healthcare settings?

I’ve been a firm believer in early intervention from the very beginning. I actually requested James’s first evaluation on his second day of life — and to my surprise, they showed up. At the time, James was in the cardiac intensive care unit at Duke University Hospital. Knowing he faced cardiac challenges so early on, and hearing words like “stroke” and “brain bleeds” by day five, was overwhelming. But we prepared for as much as we could and learned quickly that the best way to advocate for your child is to ask questions. If something doesn’t sound right, it probably isn’t — so keep asking until you understand and feel confident.

In our community, I try to show up for the disability and medically complex communities as much as I can. I currently serve as a Parent Coordinator for the Family Support Network of Central Carolinas’ peer-to-peer mom group, and it’s truly fabulous. There’s a group for every family and every situation — and if you’re nearby, we’d love to have you join us!

5. Many families use safety tools like our Sharewear ID bracelets to give their child a bit more independence. How do you balance keeping your child safe while still empowering them to explore and be independent?

It really is a balancing act. As parents in the medical world, we tend to see every possible hazard, every uneven patch of ground or potential spill — but we still want our kids to experience the joy of exploring. For James, we do our best to make sure his environment is as safe as possible while still giving him room to take chances and to find out on his own.

If he does fall, he’s in a space where he can get back up on his own. Sometimes that happens, sometimes it doesn’t — but either way, he knows he got this.

Safety and independence go hand in hand. That’s why many medically complex families trust Sharewear Digital ID bracelets — waterproof, NFC-enabled IDs that store essential medical information and emergency contacts. These bracelets help caregivers and first responders access what matters most when seconds count, providing both freedom and peace of mind.

💚 Awareness, Advocacy, and Connection

Cerebral palsy affects over 17 million people worldwide, and each story is unique — just like James’s. Raising awareness helps families feel seen, empowers communities to create accessible spaces, and reminds us all that inclusion is more than kindness — it’s connection.

James’s journey reminds us that resilience isn’t about perfection; it’s about perseverance. His laughter, courage, and determination reflect the heart of every child learning to thrive in their own way.

This month and beyond, Sharewear celebrates families like James’s — showing the world that ability always outweighs limitation.

🌈 Learn More & Get Involved

Amanda Anderson
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