Lissencephaly Research and Callie Care Fund

January 2025 Update

We wanted to give our community an update on Ms. Callie now that we are a month into the new year…

First, we are excited to share that we were able to make an incredible donation to Childrens National for neuro genetic research in Callie’s name THANKS TO YOU! We cannot thank you enough.

Since her diagnosis, Callie has been very busy! She loves bath time (big fan of splashing) and meal time (she’ll eat anything!). She can sit independently, bang toys together, ask for ‘more’ in ASL, and loves to play peek-a-boo.

She has a neurologist and neurological geneticist that we see routinely. They requested an overnight EEG and Callie did great. The neurologist said he was both “surprised” and “impressed” with the amount and variation of activity going on in her little noggin! Best of all, no seizure activity!

Callie is currently in occupational, physical, aquatic, massage, and speech therapy. We are hoping to start equine (horse!!) therapy this spring.

We’re happy to report that she graduated feeding therapy and passed her swallow study. While we still have to watch her like a hawk while eating due to her increased aspiration risk, these two feeding-related achievements are a huge win for our girl!

We also routinely see care teams in physical medicine and rehabilitation, optometry, audiology, naturopathy, and child development.

Callie averages 4 appointments in a week. That’s over 200 appointments in the calendar year - and our insurance will only cover 50 cumulative therapies. With that said, we’ve decided to keep Callie’s GoFundMe open for anyone still interested in supporting Callie’s fight. We want to thank everyone for their support thus far. You are helping us make Callie’s care possible.

Though there is much uncertainty with her diagnosis - there is something we do know for certain: Callie wants to grow and learn. So we are committed to growing and learning with her. Thank you for being with us on this journey!

Go, Callie! Go! #lissdoesnotmeanless

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On Monday, October 21, Callie was diagnosed with lissencephaly - a congenital brain malformation. In laymen’s terms, her neurons didn’t go to the right place when her brain was developing in utero, so her brain is smoother than a typical, wrinkled brain. Because of this condition Callie will have developmental delays and is at serious risk for aspiration, breathing issues, and seizures.

Luckily we live in an area with one of the best pediatric hospitals in the nation - Children’s National. We are working with an incredible team of specialists and therapists to give her the best chance at flourishing.

Instead of birthday gifts, we are asking for donations to support critical neuro genetic research at Children’s National to help shed light on conditions like Callie’s. Kelly Vendley was kind enough to put together this donation collection platform for us. A small portion of the donations will also support some of Callie’s medical expenses. Any contribution is appreciated.

While this is not the path we expected parenthood to take us, we are ready to take on the journey alongside amazing family and friends like you. Go Callie, go!