Rynnie Roo Fight Club

Join Rynn’s CLUB in the fight against rare diseases! Rynn Rose, born May 17, 2022. After 112 days in the NICU, we still didn't have many answers.

(Rynnie Roo)
Someone shared that Mother Teresa once said, “I know God will not give me anything I can't handle." I’ve been telling myself that over and over to get through some of the most difficult days of my life, but then a friend had shared an altered saying in hopes of giving me strength and encouragement. She said, “God does give you things that you can’t handle so that we need and want to

rely on him.” Maybe that’s the “bigger picture” and whole point to life’s challenges?! When baby Rynn was born, we first noticed trouble with feeding and hypertonia (high muscle tone) in her arms and legs which ultimately ended us up at Ann and Robert Luries Children's Hospital. The unknowns are truly debilitating, but we did our best to keep our faith. What we learned after extensive genetic testing is that Rynn has a genetic disorder not stemming from anyone or anything except by RARE chance all on her own. She is the only child ever documented with this rare deletion and all of her concerns seemingly stem from it. Rynn is missing the entire HOCX gene, gene 12q13.13 which falls on the long arm of the 12th chromosome. Unfortunately for us, since there are no known cases similar to Rynn, we will have unknowns for what seems like forever. We have no idea what lies ahead of us, but we have been extremely blessed with the doctors, nurses, and therapists who care so deeply. Without our family, friends and co-workers, we wouldn’t have gotten as far as we have and for that I am incredibly thankful. To all of those who have helped in even the tiniest way possible, we cannot thank you enough. We truly are blessed with this baby girl God has given us. We have a long road ahead of us, but we will continue to pray for comfort and strength to take on whatever lies ahead for Rynn and our family. We are doing everything we can to ensure our sweet little Rynnie Roo continues to grow and develop to her greatest potential! The Rynnie Roo Fight Club ( Foundation in the making) was created to not only help raise funds to help Rynn continue the process of participating in more DMI Intensive Therapies that insurance does not cover, but then also it is our hope to bless other families who are going through similar trails and help meet whatever need that arises. Rynn has changed the lives of everyone that surrounds her and we know that being a part of this Fight Club to raise awareness and fight against rare diseases will help change the world too! If you feel moved to help by joining THE Rynnie Roo Fight Club you can click the link below and perouse the merchandise available and view all that the club has to offer in the details provided on the site. We are so excited to share all the good that will come of this FIGHT CLUB!

04/05/2026

Happy Easter smiles from Rynn! 😍 He is Risen!

04/02/2026

‼️ ATTENTION ‼️

The Rynnie Roo Foundation is looking to give back! This chair has helped Rynn in so many ways and it makes everyday life easier for our family! For more information about the Testa Seat click on the link in the comments!

If your family or anyone you know would benefit from the Testa Seat please reach out at [email protected]!

Photos from Rynnie Roo Fight Club 's post

02/28/2026

🦓🦓 Today is Rare Disease Day! We love you Rynn and will do everything we can to give you the best life! ❤️ Love to all my RARE friends today and everyday! 🙏❤️🦓🦓

02/14/2026

Happy Valentine’s Day! Rynn is cheesin’ big today which I’m so grateful for after a rough couple of weeks of illness! We hope you all feel the love today!! ❤️

12/25/2025

Merry Christmas to The Rynnie Roo Fight Club! We are so grateful for the support the people in this group have provided us along this journey and we hope you have a wonderful, healthy and happy New Year! God Bless! 🎄✝️

11/10/2025

Rynn enjoyed a slow, snowy ride with her brothers! 😍

10/20/2025

🤓Rynn rarerly tolerates her glasses, but we tried them to start the day today and she’s wide eyed and smiley! Documenting the smiles on this beautiful Monday!! Happy Monday to all of The Rynnie Roo Fight Club followers!! 🦘🥊 We hope you have a great day! Brooke Brumm

10/15/2025

The sky may be gray today but we won’t let that take the smiles away. Sweet smiles from Rynn today needed to be shared for all her followers to see!! We are so grateful to have lots of these recently. It’s the best! 😍

10/04/2025

More pics from the most perfect day!!

10/04/2025

The 2nd Annual Rynnie Roo Cup was a HUGE success!! THANK YOU TO EVERYONE who sponsored, donated, golfed, bought raffle or 50/50 tickets, bought shirts or even reached out wishing us the best day! What an incredibe day raising money for the most vulnerable and truly making a difference in the lives of so many! We can not wait to share with you how your partnership makes The Rynnie Roo Foundation a blessing to others! More pictures to come!!

10/04/2025

🩷💚VOLUNTEERS!!! We can’t thank you enough for all of your help yesterday!!! We could not have done it without you. You made the day run so perfectly!! THANK YOU!!!! We love you all! 🩷💚

10/04/2025

We had some sponsors and donations come in yesterday at the event and we wanted to make sure to say THANK YOU!!!!! This was our second year having our event at White Hawk Country Club and they are incredible to work with and we couldn’t have asked for a better experience. Anthony, Taryn and all of the crew are amazing to us! We love White Hawk Country Club! Thank you for being a Platinum Sponsor! We are so grateful for you!

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+12196691166

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https://theregionapparel.com/

Address

Crown Point, IN

Rynnie Roo Fight Club

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