Alice Against All Odds, CDKL5 Seizure Disorder

Help Alice Beat the Odds — and Live her Best Life!

We’ve had requests for a mailing address-

Yes, you can send your cards and gifts to Alice!

Alice Against All Odds

c/o James and Jordyn Hinrichs

PO Box 538

Prior Lake, MN 55372

(️ checks payable to James and/or Jordyn Hinrichs )

Alice’s Story

On January 15th, 2025, Alice Hinrichs came into the world—beautiful, seemingly perfect, and full of promise.

She was born into a home overflowing with love, a doting big brother ready to adore her, and two parents who had long dreamed of the day they'd hold her in their arms.

Three weeks later their entire world turned upside down, everything changed, the life they had planned for, and life as they knew it, would never be the same.

Alice had her first seizure. At home. In her mother’s arms.

Since that day, she’s had hundreds of seizures. Some days, they lose count—because the seizures just keep coming.

Baby Alice has been poked, scanned, monitored, and hospitalized repeatedly in her first months of life. She’s been medicated more times already than many of us will experience in our lifetimes.

Alice was diagnosed with CDKL5 Deficiency Disorder -

a rare, devastating genetic condition that causes relentless treatment-resistant seizures and profound lifelong developmental challenges, including cognitive, motor, speech and visual function impairments.

CDKL5 affects roughly 1 in 40,000-60,000 children, yet remains poorly understood and vastly underfunded. It is an overwhelming diagnosis for any family to come to terms with.

Most children with CDKL5 will never walk or talk,

and yet—Alice smiles. She laughs. She reaches for her family with light in her eyes and a spirit full of joy.

She is our little warrior, every milestone she meets is a celebration in our big extended family! …and we’d like to share some of that joy with you, through pictures and videos.

They Are Fighting Beside Her — Every Single Day

We are all watching as James and Jordyn pour every ounce of themselves into giving Alice the best care available, while maintaining as much normalcy in Arthur’s life as possible.

Their love is fierce. Their fight is unwavering. They are doing everything in their power to place Alice at the forefront of advanced care and emerging treatments, and we’ll always be hoping for medical miracles.

With your support, our fundraising goals will help with-

*Traveling to leading specialists and clinical research centers.

*Covering the cost of cutting-edge medications, some of which are not fully covered by insurance.

*Paying out-of-pocket for ongoing therapies—physical, occupational, and speech—that Alice desperately needs throughout her lifetime.

*Providing 24/7 seizure monitoring, day and night, to keep her safe.

*Purchasing specialized medical equipment and mobility aids, as she grows.

*Managing the financial strain of missed work, and possibly becoming a full time caregiver as the challenges for Alice grow, striving to put family first.

*Facing the never ending avalanche of medical bills and insurance limitations in the years to come.

They are giving everything they have, but they can’t do this alone, we are asking for your help.

Your Gift Can Change Alice’s Life

Every dollar donated will go directly to help fund Alice’s ongoing medical needs.

It will help cover the immense costs insurance won’t touch.

It will give James and Jordyn the support they need to stay strong and steady, and hopefully provide some mental relief.

Most importantly—it will give our little Alice the fighting chance every child deserves.

If you’re able to give —thank you.


If you will share this with others—thank you.


If you’ve already sent your love—please know it’s felt, deeply.

“Alice Against All Odds” Isn’t Just a Hashtag

It’s their new reality, today and forever. It’s the story they’re writing—seizure by seizure, day by day, breath by breath, and with every smile they share.

It’s the mission we are all on together.

Thank you for standing with us.

With heartfelt gratitude,

Jordyn’s Mom and Sister

On behalf of the Hinrichs Family

#AliceAgainstAllOdds

***The website below offers alternative ways to donate and follow along with Alice’s story,

please follow our Facebook and Instagram updates.

AliceAgainstAllOdds

aliceagainstallodds.com

For more info on CDKL5 https://www.cdkl5.com/about