(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!
