Support Callie and Nola's Journey with Lissencephaly

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$15,441 raised of 

Support Callie and Nola's Journey with Lissencephaly

Support Callie and Nola's Journey with Lissencephaly

0% complete

$15,441 raised of 

128 donations
Donation protected
Looking Ahead to 2026

This past year has been nothing short of humbling. The love, generosity, and encouragement our families have received through this GoFundMe has carried us through some of our hardest days and reminded us—over and over again—that we are not walking this journey alone.

Because of you, we’ve been able to support Callie & Nola's ongoing medical needs, therapies, equipment, and care that simply aren’t covered elsewhere. Every donation, message, and share has mattered more than we can ever fully put into words.

Over the last year, something else meaningful has grown out of this community’s support: the creation of our nonprofit, Liss Not Less.

As we move forward, we want to be completely transparent about how your support can be directed:

• The GoFundMe will now be dedicated specifically to Callie & Nola's ongoing medical needs.

• The Integration of Genomics and Machine Learning Special Purpose Fund is dedicated to advancing research that uses cutting-edge genetics and artificial intelligence to better understand and diagnose brain malformations like lissencephaly (http://giving.childrensnational.org/goto/LissNotLess)

• Liss Not Less is the nonprofit we created dedicated to helping build a neurodivergent-friendly future. Our mission is to raise awareness, foster community, and provide meaningful support for families affected by lissencephaly and other rare neurological conditions. At this time, funds raised through the nonprofit serve a dual purpose: supporting Callie & and Nola’s medical needs, and advancing research to better understand and diagnose brain malformations like lissencephaly.

As a new organization, the Liss Not Less team is thoughtfully and responsibly laying the groundwork for how we may one day support other families through nonprofit funding. We are committed to taking intentional steps—learning, growing, and building carefully—to ensure we can make the greatest possible impact when that time comes.

You now get to choose how you’d like to support — Every form of support matters deeply to our families.

From the bottom of our hearts, thank you for believing in the Liss Sisters and in the mission we are carefully building. Your trust means everything to us.

With love and appreciation,
The Domio & Maguire Families

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Meet the "liss sis"-ters: Callie and Nola!

Callie and Nola were brought together by fate and bound by an extremely rare genetic brain malformation called lissencephaly. This condition means the girls face significant developmental delays and are at increased risk for aspiration, breathing issues, and seizures.

Thanks to incredibly dedicated family members, supportive friends, an amazing team of providers, and the sheer will power of both girls - they are progressing and achieving milestones they weren’t expected to meet.

Both families are dedicated to helping build awareness and collecting funds for much needed neurogenetic research and critical medical services for the girls.

Our reality is filled with countless hours of appointments each week and an uncertain path forward, but Callie and Nola tackle each day with unwavering joy. They show us every day that there is beauty and possibility in the unknown.

Lissencephaly affects 1 in 100,000 people - so you may wonder how Callie and Nola met each other. After MRIs confirmed the girls' condition, both sought out specialty care at Children's National Hospital and were assigned the same genetic counselor. Upon meeting the families separately, the genetic counselor was shocked to find two girls with atypical lissencephaly presentations. After asking for permission from both families, information was exchanged and the rest is history!

Ms. Callahan
Meet Callie, our charismatic daughter who will be two in November. Callie is a fearless and outgoing little girl with facial expressions for days (if you know, you know) and amazing hair. Her favorite hobbies include pointing (at EVERYTHING), books galore, playing fetch with dad (...but actually), and trying to pet her 2 cat-sisters.

In October 2024 Callie was diagnosed with lissencephaly. Nothing can prepare you for news like that, but with the incredible love and support from family and friends - and most importantly, Callie's strength and determination - we know that her future is bright.

Ms. Nola
Meet Nola, our incredible daughter who will be three in October. Nola is pure sunshine – a bright, happy, and cheerful girl with an amazing smile (and incredible hair)! Whether she's singing "Wheels on the Bus”, playing with her sister-pup, Olive, dancing to music, being silly, or reading books with her family, Nola is a loving, tenacious little girl who brings immense joy to everyone she meets. Every milestone Nola has and will achieve is a testament to her strength and determination.

After putting Nola in physical therapy in July 2023 due to a perceived delay in her developmental milestones, we finally received answers in March 2024 when Nola was diagnosed with lissencephaly. This diagnosis was utterly devastating and not what we expected for our parenting journey. Yet, it also brought clarity, allowing us to support Nola's development through extensive therapeutic interventions which Nola tackles with unwavering joy.

Thank you for your love and support past, present, and future.

Love,
Rich, Rachael, Elliot, Chelsea, and the "Liss Sis"-ters
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Co-organizers2

Rachael Maguire
Organizer
Vienna, VA
Chelsea Barkema
Co-organizer
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