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
THOSE WHO SHAPED US
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.
GROWING WITH THE KIDS
We’ve been doing this for more than two decades, and the kids we knew became teens and adults. Their needs, interests and dreams changed, and so did the ways we support them.
We’re still here for the families just beginning this journey. We’re still here for the kids we watched grow up.
We’re not changing who we serve. We’re growing with them.
OUR MISSION
We support individuals and families affected by VEPTR and related complex chest wall and spinal conditions.
We support the person living the story. not just the medical part of it.
WHERE WE ARE NOW
Medicine and technology changed. The way families find each other changed. Most importantly—the kids grew up.
We listen. We learn. And when our community shows us a need, we find a way to help.
OUR IMPACT
Not everything that matters can be counted. A parent getting an answer. A family learning about a resource. Helping someone tell their story. Watching a child become an adult and discover their gifts.
Some of our impact can be counted.
A lot of it can’t.
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.
