Hearts for Lucy

Hearts for Lucy Lucy has an ultra-rare genetic condition called SMARD1. Follow her story and watch her grow!

🎄Merry Christmas from Lucy and family! It’s been a busy and wonderful couple of days full of family and fun🎄
12/26/2025

🎄Merry Christmas from Lucy and family! It’s been a busy and wonderful couple of days full of family and fun🎄

Lucy had a blast at Wild Lights!
12/23/2025

Lucy had a blast at Wild Lights!

12/20/2025

Like any 5 year old, Lucy’s greatest joy right now is playing games on her tablet. We are so proud of her perseverance and how much she is able to do independently, including choosing her own games and navigating some of the menus. This video of her playing a Bluey game is from a couple of weeks ago, but it’s a good example of what she can do. Even as she loses strength and her disease progresses, she is always teaching us how resilient and amazing she truly is!

A couple days late, but we’re kicking off the Christmas season over here! On Saturday, the girls loved opening their St....
12/09/2025

A couple days late, but we’re kicking off the Christmas season over here! On Saturday, the girls loved opening their St. Nick’s presents, then we immediately set off to have breakfast with Santa! Santa knows how special Lucy is and blessed her with a beautiful personalized bracelet while we were there. 🎅🏼❤️

Shoutout to Huelsman Jewelers, whom Santa went to for the bracelet. Like Santa, they were touched by Lucy’s story and it was created free of charge. ❤️💚

12/05/2025

🍁 November with Lucy! 🍁

Happy Thanksgiving from Lucy and family!
11/28/2025

Happy Thanksgiving from Lucy and family!

An exciting development for our family — we recently had a wheelchair ramp added to our house! We’ve wanted one for a lo...
11/11/2025

An exciting development for our family — we recently had a wheelchair ramp added to our house! We’ve wanted one for a long time and are so excited to finally get in and out with ease… and just in time for the cold weather ❄️

11/03/2025

🧡 October with Lucy 🧡

🎃 Happy Halloween from Lucy 🎃
11/01/2025

🎃 Happy Halloween from Lucy 🎃

Photo dump from the last week of October! Lots of Halloween festivities. Lucy joined her kindergarten class for a costum...
10/31/2025

Photo dump from the last week of October! Lots of Halloween festivities. Lucy joined her kindergarten class for a costume parade and fall party. It was so fun seeing the other kids interact with her! She loved getting wrapped up like a mummy. We also took the girls to get some pumpkins and see some animals at Daniel’s Greenhouse this week. And we have lots of matching Halloween outfits! I also included a couple of artwork samples from school that Lucy has been working on this fall (with help.)

Boo at the Zoo last night! It was crazy crowded and we barely found a place to park, but we made the most of it! When we...
10/20/2025

Boo at the Zoo last night! It was crazy crowded and we barely found a place to park, but we made the most of it! When we got back in the car, I asked Lucy if she had fun and she said “Cookie!” So apparently the best part was seeing the man who was wearing an inflatable Cookie Monster costume, LOL!

Lucy’s kindergarten school photo! 😍
10/19/2025

Lucy’s kindergarten school photo! 😍

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St. Charles, MO
63303

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