This is our story.
Hi, we are Sara and Jake.
We are the proud parents of two magical kiddos, Lola and Mills. Lola is our oldest at three years old. Mills is our youngest at one year old.
Two weeks before her first birthday, our Lo was diagnosed with Zellweger Spectrum Disorder. Instantly, our world stopped. Like every family who’s faced a diagnosis with no cure, we felt profound despair and helplessness. Something we had never heard of before now suddenly took over our entire existence. It felt like a death sentence. It challenged our faith in ways that felt insurmountable.
We thought there would only be darkness ahead.
Instead, parenting Lo is like bottling magic.
Every day, we are thankful that we get to be Lo’s parents. Yes, there are days where it is impossibly hard. Yes, there are days when we feel sad and beaten down.
But…
To know Lo is to know joy. She radiates happiness to us and to so many others. Her laughter stops strangers in their tracks at the grocery store. Her babbling chatter gets everyone listening. She’s the life of the party anywhere she goes - even though she can’t say words yet. Her friends at pre-school shout “Lola’s here!” when she arrives. Her loving way of grabbing your neck and patting her hands against your face makes you feel like you can conquer the world.
And that’s exactly what we’re trying to do.
We are here because we’re learning how to live—like, really live—and how to fight in the hellish aftermath of a Zellweger diagnosis.
Our goal is to find a cure.
To deliver the knockout punch to a terrible disorder that has robbed so many lives so unfairly early. We are realistic about what we're facing. We are not in denial. Rather than hide from the fear, we’re facing it with our daughter and for our daughter.
She gives us the courage to fight for her.
Our little warrior.
Get to Know Lo
Some of Lo’s favorite things include:
Playing “the hand game” which entails tapping and clapping hands. It’s how she meets new people and greets her favorite people.
Car rides around our neighborhood in her little push car.
MUSIC! The girl has good taste too. She’s a huge Switfty, Lizzo, and Harry Styles fan. We do a LOT of dancing while holding Lo in our kitchen.
Lo LOVES school. She attends OSU Nisonger and they do an amazing job providing an inclusive and supporting environment for rare kiddos. Lo has so many little friends there.
Reading books and especially turning the pages. This is Lo’s favorite pastime.
Her amazing medical team! Lo is supported by 8 incredible specialists at Nationwide Children’s Hospital and a wonderful therapist team at OSU Nisonger and she thankfully really enjoys “visiting” her team.
Spicy foods. She likes her morning eggs with salsa and her chili with jalapeño! She takes after her mama.
Her dada! Lo is a daddy’s girl. She adores kisses, snuggles, and hugs from her dad and always pats his beard.