Women's Leadership Speech

It's been a year since I spoke at Erie's Women's Leadership summit and shared about my story that led me to creating 2villages... Resharing here...

I’m humbled to share the stage with incredible leaders who are making waves for our community and our children. My name is Carole Bakhos. My family and I have been living in Erie for the past four years. This is my husband, Sid… our daughter Yara, who is 12… and our son Mazin, who is 6.

Thank you for the opportunity to share a little bit of our journey with you this evening; a story of challenge, change, and ultimately, purpose.

Ten years ago, my daughter Yara was diagnosed with a rare condition called Jordan’s Syndrome. I still remember the call. I was at work, in my office, when they said,“We have an answer. You can come in this afternoon if you'd like.”

We had been in the middle of what they call a “diagnostic odyssey”; a long, uncertain search for answers as Yara was developing at a pace that wasn’t typical. She was just two years old. She used a walker to get around and communicated through sign language and a speech device as she was fully nonverbal.

But the diagnosis didn’t bring the clarity we had been hoping for. At the time, there were only six known cases in any medical publication. We were handed a single sheet of paper and told, simply: “Go home and love your child.”

That evening, Sid and I sat on the floor of our living room. We weren’t talking. We weren’t crying. We were simply… still.

There was suddenly a void between us and the rest of the world. We had no one to turn to. We didn’t even know what questions to ask.

Up until that moment, I believed life rewarded hard work and kindness in equal measure. Not because I was sheltered. I had lived through war, through poverty. I had moved to a new country with almost nothing. And yet, that belief had always stayed with me.

But that night, like any parent, we knew we would do anything for my child.We were ready to fight for her. To figure it out. To do whatever it takes.

They often say that receiving a disability diagnosis for your child is like going through the stages of grief. And I believe we went through all of them right there, on that living room floor. And then we accepted the life ahead of us.

For the next year, I kept doing it all.

I was at the height of my career laser-focused on that corner office, leading a global research and development team, the youngest on the leadership track, proud of what I had built.

At the same time, I was squeezing in therapist appointments during lunch breaks, following up after work, staying up late reading, researching, and preparing materials to support Yara’s development.

She was in a critical window for learning, and I was determined; obsessed, really; to make the most of every moment.

Then, we met with a specialist at Seattle Children’s Hospital who told us something that changed everything: “There may be a treatment that could make Yara’s day-to-day life easier… it just doesn’t exist yet.”

That knowledge... that possibility... was too powerful to ignore. I lost sleep over it for months.

And then I made one of the hardest decisions of my life: I left my job.

I stepped away from everything I had built to focus fully on Yara; on starting the research, building a community, and looking for answers no one else was looking for. It was a big and scary endeavor, but it was necessary. 

We all do whatever it takes for our children and for me, this was part of my ‘whatever it takes.’ 

That decision was the beginning of our journey toward a treatment. To put that in perspective: fewer than 5% of rare diseases ever have a treatment and when they do, it’s usually after decades of research and tens of millions of dollars.

Fast forward to July 1st, 2025; just 8 years later… coincidentally on my birthday… Yara took the very first pill at Seattle Children’s Hospital as part of the first-ever clinical trial for Jordan’s Syndrome.

A drug that holds the potential to help her and others living with this rare condition for generations to come. A drug designed to make the everyday a little easier… so they don’t have to work so hard for every little thing.

That moment was the result of a collaboration our foundation led bringing together nine institutions who, for the past eight years, have been laser-focused on making this a reality. It’s the most rewarding project I’ve ever had the privilege to lead.

Today, we don’t just have a diagnosis... we have a community.

The Jordan’s Syndrome community now includes over 450 families across 50 countries united in support, advocacy, and love.

I’ve had the honor of speaking to almost every single one of those families on the day they received their diagnosis and helping to close that painful void, answering the questions I once didn’t know how to ask, making sure they don’t feel lost or alone.

Last summer, we held our fourth in-person family conference in Boston; 120 families, together in one space, sharing hope, stories, laughter, and tears.

But our circle has grown even wider. I now get to serve and advocate for the broader rare disease and disability communities amplifying their voices and turning to them for support whenever I face a new stage in our journey or simply feel tired.

And today, I’m no longer drowning under the weight of it all.

I’m at a place where I can give back, lift others up, and share the tools and strategies that helped us. That’s why I launched 2villages.life; a platform to share what I’ve learned, so that anyone who needs guidance, perspective, or just a reminder that they’re not alone… can find it. It takes a village to raise a child; in our case it takes two.

Looking back, I’ve come to see that life can be fair and that good things do come to those who lead with kindness and perseverance.

I’ve had the chance to live a life filled with purpose. To witness cutting-edge science being used to improve the lives of individuals with disabilities. To connect with people from all over the world; different stories, different paths, but united by a powerful bond and a shared voice.

I’ve found my own voice too and learned how to use it to stand up for what truly matters.

But above all…I’ve had the privilege of parenting the most incredible girl I could have ever dreamed of.

A daughter who challenges me every single day to be a better woman, a better mother…

And for that, I am forever grateful.

Yara is bright, kind, and incredibly funny; a light in every room she enters. She works tirelessly for what comes naturally to most, facing each challenge with unwavering determination and a smile that lights up her face. 

What stands out the most about Yara is her perspective: she doesn’t see her condition as something unfair. Instead, she views it as an opportunity to shine just as she is and to leave a lasting impact on the world and everyone around her. 

Life doesn’t always follow the story we thought we were born into. Sometimes we have to redefine ourselves, accept the cards we’ve been dealt, and choose to play them as a winning hand. 

And that’s what it means to learn to be: not just surviving the story you’re given, but reshaping it with resilience, with purpose, and with the community that lifts you along the way.