Livy Rae's Journey with HLH

16/07/2025

Woohoo!! Let’s help Terry get that trophy and help Tree City Fall Festival shine bright by supporting a great cause! 🧡🎊💦

Festival Spirit Meets Splash Zone Fun! 💦 Get ready—Terry Christianson, representing the beloved Tree City Fall Festival, is stepping into the dunk tank spotlight! Terry is known for helping bring the magic of fall to Greensburg, but this summer he's bringing that same energy to the dunk tank for a little midsummer fun. Whether you’ve enjoyed the festival parades, live music, or hometown charm, here’s your chance to say thanks—with a well-aimed toss and a big splash of appreciation!

Check the comments to donate towards Terry's name through that link.

*Dunk Tank Participant who has the most donations will receive the 2025 Dunk Tank Trophy*

See you at the Decatur County Fairgrounds on Wednesday, July 16th at 7pm!

28/05/2025

Livy and her family would like to thank her incredible St. Mary’s family, Savannah René Sefton and everyone on her 5k team , for being the light and helping her help those just like her with HLH!! This wouldn’t have made as big of an impact as it did without each family that showed up and helped out in all the ways!

Together you all raised $2400 (packaged in that envelope) and it was sent off to the HLH Heroes Foundation today! In no time it will be helping families all over the US and even here close to home at Cincinnati Children's!!

These funds will be financially helping a family pay some bills as they care for their child in the hospital, it will provide comfort to a family with a care basket filled with items that one doesn’t think about packing when your child is fighting for their life, it will send a memorial gift to a family that has lost their child to this terrible disease & even send a gift to a family when they reach Day+100 which is a HUGE milestone in a bone marrow recipients world!!

All the generosity has sparked Livy’s light and helped her see all that she can do to help others! She’s got some really FUN AND BIG IDEAS for next year!! STAY TUNED!!🥹🎊😆

THANK YOU FOR BEING PART OF THIS! 🥰💙🎊🙌🏼💙✨

28/05/2025

Anyone from Livy’s team want to take a guess for a chance to WIN A PRIZE??😆🎊🎖️

Before we announce our final # of participants for our 5k and our final # raised… does anyone have any guesses?

Whoever is closest to the total # of participants gets a prize! ⭐️

And

Whoever is closest to the total number of funds raised gets a prize! 🌟

17/05/2025

We did it!! Can’t wait to get the final count of how much we raised together! & excited to see everyone that’s on my team in other states have fun with their 5k however that might be!🥰🎊💙

14/05/2025

This happened today and it’s too sweet to not share with all of you that have loved Livy through the highs and lows of her journey! She became an author today alongside her classmates and was able to write about anything around the topic of being the light in this world and she choose to discuss HLH! 🥹💙🥰🎊

25/04/2025

Join my team today and be the one to WIN this swag bag!

https://runsignup.com/Race/143048/Donate/8UoZSFjuF25OaiB9

Update: Katie Ricklefs is lucky #250 🍀 !

We're SO close to 250 runners! 🎉

Join HLH Heroes 4th Annual Virtual 5k!!!and be part of something amazing—whether you're walking, jogging, or racing from your treadmill or trail.

Bonus: The 250th person to sign up gets some exclusive SWAG sent straight to their door!

Help us hit this milestone by sharing or tagging a friend! 💙

Sign up here- https://runsignup.com/Race/MO/SaintLouis/HLHHeroes5k

07/04/2025

Today Livy had her💙 S I X T H 💙annual checkup at Cincinnati Children's!!

As you can see her favorite snacks are always apart of our days here! We have no concerns and will continue enjoying life with Livy even though she has a low engraftment, last year it was 9% and it has been in single digits the past 6 years!!

Her story and journey has such a big purpose! Livy knows how important it is that we help other HLH families that face this diagnosis & we will forever give back to just that!! We pray everyday that she grows to know how truly blessed she is and how grateful we are for her presence!!

Livy carries a lot of anxiety & fear for pokes to check labs and get vaccines. With each passing year she’s older and wiser which brings on many tears and questions as she ponders why. We always promise her to get her whatever meal her sweet little heart desires and something from the gift shop, year after year she wants to create her own salad at the hospital cafe and a cuddly stuffy to add to her collection 🥹💙🙏🏼

Sweet Livy loves school as she’s completely rocking 1st grade, she loves sports and being outdoors! Playing softball with Indiana HUSTL 8u-Staggs is her absolute favorite thing right now and she is enjoying her reign as Little Mr. and Miss Tree City 🥰👑💙

04/04/2025

It’s that time of year ALREADY!!! Livy is celebrating 💙✨S I X YEARS✨💙since that incredible bone marrow transplant that saved her life!! 🥹🎊🙏🏼🥰

Because of all the medical professionals, the special and selfless donor from Germany, all the blood donors and our amazing support system that helped in all the ways, Livy has got to experience SO MUCH!!
🧬💉🩸✝️🙏🏼✨ 🧬💉🩸✝️🙏🏼✨ 🧬💉🩸

She LOVES softball, enjoys basketball and we are working on volleyball!! She has grown into an incredible student and closing up her 1st grade year!! She is a little sister and a big sister! She’s a foodie at heart and just has a smile that radiates joy wherever she goes!
🥎🏐🏀🥰📚✏️💖 🥎🏐🏀🥰📚✏️💖

Consider signing up and joining us this year as we support families facing this diagnosis.
🏃🏻‍♀️🎊💙✨ 🏃🏻‍♀️🎊💙✨ 🏃🏻‍♀️🎊💙✨ 🏃🏻‍♀️🎊💙

HLH Heroes Foundation's Virtual 5k Fun Run is on Friday May 16, 2025 to Friday May 23, 2025.

28/10/2024

🚨🥎Livy LOVES softball, tried out and made a travel team for the 2024-2025 season!! She would LOVE YOUR VOTE for the Halloween costume contest! 🎃🍭🥎🍫🎉🎃

It’s super simple, just like the original photo below & you will help her team win a FREE TOURNEY this coming spring/summer! 🚨🥎

17/05/2024

A special thank you to everyone that signed up to support my team! Can’t wait to see the rest of you and celebrate on Saturday🥹💙🎉🙌🏼

Livy is getting to an age where she asks so many questions and is forming her own ideas of what she thinks it means to be an HLH warrior!! She doesn’t like the pictures of her with all the tubes and wires, but she knows she was a sick baby girl and overcame it all with God’s help. She also is amazed at how many people truly were apart of lifting her up in prayer and helping our family through the toughest fight …the fight for her life!!

While we wish HLH didn’t affect anyone after her it’s not reality. We have met so many families and being able to provide hope with her story along with connecting with families through the HLH Heroes Foundation it truly is amazing!

When you support events like this 5K, you’re supporting a real family like ours, that goes and does anything possible in order to save their children’s lives!!! $5 makes a difference!! Help us reach our goal this year to be able to help even more families just like ours!! 🥹💙🎉💫

15/04/2024

💥💙Anyone want to join my team? Today’s the last day for early registration!! 💥💙

You can complete the 5k anywhere, but our family will be completing ours in Cedar Rapids, IA on 5/9 and another in Greensburg, IN on 5/18, if you’d like to join us we would LOVE IT, but it would be pretty cool to have representation anywhere you might be from too! 🥰💙

https://runsignup.com/Race/143048/Donate/iIdXO7Lq35YOIXXW

Its that time of year again! We are so excited to announce that registration is officially OPEN for HLH Heroes Foundation's 3rd Annual Virtual 5k Fun Run!!

Grab your friends and family and get a team together to participate, help raise awareness about HLH (Hemophagocytic Lymphohistiocytosis), and ensure that

Register here!💙➡ https://runsignup.com/Race/MO/SaintLouis/HLHHeroes5k?fbclid=IwAR0FzR-I_-kCc71xSl04Sehk77fY8sYKGREg6kZYxKUW9ZTLUEntDavIRXI