Lissencephaly Research and Callie Care Fund

July 2025 Update

Last month Callie completed her first round of intensive, or dynamic movement intervention (DMI) therapy with the amazing @sunnydayspt For two weeks of back to back therapy sessions, Callie showed us how incredibly smart and determined she truly is. She was challenged to move her body in new ways, build strength, and learn new skills. Oh, and she had fun along the way!

Callie worked on sitting up from laying down; walking up and down stairs with assistance; getting and staying in quadruped position; lifting her knees high enough to walk in and out of boxes; enhancing her arm and leg coordination for assisted crawling; and pulling up into kneeling position!

This last month has been particularly challenging for us as CJ has entered her toddler era, highlighting just how wonderfully different she is.

We look forward to watching her grow, shine bright, and defy all odds.

As always, we are so thankful for our community loving and supporting Rich, myself, and our girl. We couldn't do this without you!

May 2025 Update

At almost 18 months old, Callie continues to impress us with new skills - showing us just how badly she wants to learn new things.

Callie loves cats and dogs (though, it takes her a bit to warm up to dogs). She loves to growl and paw, pretending she is a tiger - but don’t worry, she’s a nice tiger!

She can point to what she wants, clap her hands, and shake her head no. She can also turn off the lights using the light switch!

With guiding hands on her hips, she self propels, trying to walk. We still aren’t crawling, but hoping that she is inspired soon!

She loves the park. When asked if she wants to swing or slide (a tough choice because she loves to do both!) she considers her options by looking back and forth between the two, and then points to what she would like to do first.

She has started to use her imagination. She will use a spoon to feed her baby dolls or share her pacifier if you “cry”. Her favorite song is “BINGO” - to which she will clap and say “O” at the right part of the song.

Girlfriend loves books, though right now she seems to like turning the pages more than actually listening to the story. No less than 3 books before bed will do. If you skimp…she will let you know.

Next week, she will start intensive physical therapy. Intensives are a combination of dynamic movement intervention exercises and play based therapy, with use of modalities like whole body vibration, electrical stimulation, and use of compression garment. Many children make almost a year’s worth of progress in a single intensive - so we are eager to see how Callie progresses. She will have 2, 45 minute sessions daily, five days a week for 2 weeks. Talk about a flashback to high school sport 2-a-days!

As always, we are so thankful for our community. Whether it’s holding her so we can eat, reading her a book, singing her a song, or telling her story we couldn’t do it without each of you!

#lissdoesnotmeanless #gocalliego

Callie’s special needs and care will be life long. Her GoFundMe is always open for those interested in supporting our girl.

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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!