OUR STORY

IT ALL STARTED WITH A 2-YEAR-OLD.

In 2000, Zoe was two years old. I was 20, a single mom, and my parents and I were trying to find answers for a little girl with complicated medical needs involving her spine, ribs and lungs.

We weren’t trying to start a foundation.
We were trying to help Zoe.

BEFORE ROOM TO BREATHE, THERE WAS VATER CONNECTION.

When Zoe was born in 1998, I was a young mom trying to understand a diagnosis I’d never heard of. Somehow, I found Vater Connection.

Angie and Nancy had started it in 1997—a website and message board where families affected by VATER/VACTERL could find each other. Before social media, before groups and apps, there they were.

They created a place where parents helped other parents. Nobody had every answer. Families simply shared what they knew because it might make things a little easier for the next person.

I was just Zoe’s mom, and I needed help.

TEXAS

2000: THE SEARCH FOR VEPTR

When Zoe was two, our search took us in a new direction. We began learning about an experimental rib-expansion procedure for children with severe chest wall and spinal conditions.

Information was limited. Families and doctors were learning together.

Three hospitals. Four doctors. All more than eight hours from home. Texas, Boston and Pittsburgh were the three places doing the VEPTR procedure at the time. I shared what I knew—phone numbers, names, what to expect. Sometimes I had answers. Sometimes I didn’t. Sometimes another parent just needed someone who understood why they were scared.

I was helping because other people had helped me.

BOSTON

PITTSBURGH

The first hospitals offering VEPTR

The third hospital offering VEPTR

The second hospital offering VEPTR

BEFORE WE EVEN HAD A NAME THE HANKEY FAMILY

In June 2000, the Hankey family lost their seven-year-old son, James David Hankey III. In the middle of their own grief, they asked that memorial contributions in his memory be directed to the Zoe Lambert Fund.

Their kindness became part of what shaped everything that came afterward.

The Hankey family is part of our beginning, and always will be.

2002: ROOM TO BREATHE GETS A NAME.

By 2002, more families were finding each other. What had started with phone calls and conversations became a support group.

We talked about surgeries, hospitals, recovery and everything in between. We shared what we learned, celebrated good news, worried together, and most of all—said, “I understand.”

2011: MAKING SURE IT CONTINUED.

By 2011, Zoe was nearing the end of her surgical journey, but Room to Breathe wasn’t just about Zoe anymore.

In 2011, Room to Breathe formally became a nonprofit.

The paperwork happened in 2011.
The work had already been happening for more than a decade.

ANGIE & NANCY - VATER CONNECTION

When Zoe was born, Angie and Nancy gave me somewhere to turn. They showed me what a support community could be.

They helped me first. I carried that forward

IN MEMORY OF THE HANKEY FAMILY

KINDNESS BEFORE ROOM TO BREATHE HAD A NAME

After losing their son, James David Hankey III, the Hankey family chose to help another child.

Their kindness is part of our history.

REMEMBERING JENNIFER “JENNY” HODES

MORE THAN A PATIENT

Jenny was part of us. We watched her grow up, follow her dreams, and care deeply about others.

She was part of Room to Breathe then, and she is still part of our story today.

WHY WE STILL TAKE PRECAUTIONS

Respiratory health has always mattered in our community. We wear masks around those who are medically vulnerable.

If it’s one small thing we can do to help protect someone, we’ll do it.

AND IT STILL COMES BACK TO ZOE.

In 2000, Zoe was two. We were just trying to find a way to help her.

Other people showed up for us, and that started showing up for other families.

Those families became a community. That community became Room to Breathe. More than two decades later, the programs are different and the kids aren’t little anymore, but the reason we’re here hasn’t changed very much.

People need people.

Sometimes they need information. Sometimes they need resources. Sometimes they need an opportunity. And sometimes they just need somebody who understands.

THE SUMMERS FAMILY & VEPTR.COM

ANOTHER FAMILY HELPING FAMILIES

As the VEPTR community grew, families found new ways to connect. The Summers family, a VEPTR family themselves, created VEPTR.com — The Titanium Rib Project, an online gathering place where families could share experiences, ask questions, see photos, and find others who understood the journey.

Long before today's social media groups, VEPTR.com helped connect families across distances and became part of the growing VEPTR community.

Today, VEPTR.com directs visitors to Room to Breathe Foundation, and we are honored to carry that connection forward.

To the Summers family: thank you for what you built, the families you helped connect, and for allowing Room to Breathe to be part of what comes next.