Paying It Forward with Team Tiny Hero
We at Tiny Hero help work to provide hope, resources, and support for innumerable CDH families. After reaching the end of the marathon, many people ask how they can give back to an organization that has made such a difference in their lives. One great way to do that is through raising funds to support Tiny Hero’s mission— which is also a fantastic way to spread awareness and advocate for fellow CDH families!
Team Tiny Hero is Tiny Hero's fundraising and awareness-raising program. Our season kicks off March 1st and will continue through the end of April (CDH Awareness Month)! Join the team to support Tiny Heroes and families affected by a CDH diagnosis and win great prizes!
Hear about five families’ journeys with CDH and how they are paying it forward by participating on Team Tiny Hero.
Jenny and Tiny Hero Charlotte
My daughter Charlotte was born with left-sided CDH with 45% of her liver in her chest, along with her stomach, spleen, colon, and small intestines. If you looked at her now, you would never know that when she was born, she quickly maxed out on vent settings, and she was too unstable to move to the OR, requiring a bedside repair. She is two and a half now, just graduated from physical and speech therapy, and is signed up for soccer this spring! I am just so proud of her, and I will never not be in awe of her strength.
I love participating in Tiny Hero’s fundraisers because I remember the hopeless feeling after diagnosis and the many unknowns. My hope is that any funds I raise can go towards erasing that hopeless feeling for newly diagnosed families.
We received a Tiny Hero grant, a care package, and, most importantly, Tiny Hero gave us connections to families who provided us with hope and guidance. Raising funds for charity is always rewarding and even more meaningful when it is for something so close to my heart. I am always so grateful to the people who donate and proud of the amount we raise when we work together. I love seeing how all the small amounts add up. It proves that any amount can make a difference. And together, we can give hope to all the newly diagnosed families exactly when they need it most.
Ally and Tiny Hero Zeke
Our Tiny Hero, Zeke, was born at Johns Hopkins All Children’s Hospital with left-sided CDH. He spent just over two months in the Center for CDH. Of that time, ten days were spent on ECMO and 21 on the ventilator. He also received a G-tube before we went home. He has since had two other hernia repairs, an emergency surgery to repair a partial bowel blockage, and an eye surgery. Despite his medical challenges, Zeke is still the happiest kid you will ever meet. Everyone we encounter is drawn to his sunshine personality.
I love participating in Team Tiny Hero and the other fundraisers and awareness events Tiny Hero does because I want to help provide the same hope that was given to us years ago. Tiny Hero sent us a care package, and we received a grant that allowed us to travel from West Virginia to Florida for our consultation with Dr. Kays after our initial diagnosis. We have met so many Tiny Hero families that have helped us in many ways, from offering words of encouragement to opening their own homes as a place to stay while traveling because of CDH. Tiny Hero pulled us out of a very dark place after Zeke’s CDH diagnosis and has been a light for us since. If I can help just one family the way Tiny Hero helped us, it would all be worth it. Knowing that you helped lead a family to hope for their child is encouraging. To me, Team Tiny Hero is the best way to give back to an organization that gave so much to my family.
Nora, Tim, and Tiny Hero Trey
Our Tiny Hero, Trey, was born with right-sided CDH in June 2021. He was in the NICU for three months at Cincinnati Children's Hospital. He came home with a G-tube and oxygen support. During this challenging time, Trey showed resilience and strength as he overcame many obstacles. Trey continues to show us his strength as a happy two-and-a-half-year-old boy.
We raise funds for Tiny Hero to raise awareness for CDH and to celebrate the journey of our son, Trey. Last year, we led a virtual walk/run in the Indianapolis area and fundraised mainly through social media. Tiny Hero was an amazing resource for us. We received a grant to help with relocation costs. In addition, we received a care package and were able to connect with other families. Tiny Hero has continued to allow us to be a part of the CDH community and give back to support other families navigating this journey. I would definitely recommend joining Team Tiny Hero - it is a wonderful way to give back to the CDH community.
Latricia and Tiny Hero Vaughn
Vaughn was born with severe left-sided CDH and was on ECMO for eight days. He is our motivation – we permanently moved our whole family to Florida for his care. It’s not always easy, but we are reminded daily how far he has come. He is a special little guy in the fact that not only does he have CDH, but he has bilateral cataracts, too!
Tiny Hero has done so much for us, and we have felt so much support from Tiny Hero that we are always excited to help in any way we can! Their grant made it possible for us to relocate and receive exceptional care. We are active in the community and have made so many friends through their Facebook support group! I recommend all Tiny Hero families join Team Tiny Hero – it was an awesome way to get excited about the race and know that we were contributing to such an impactful organization! Sharing our story and being involved with Tiny Hero’s various fundraisers has helped us feel a sense of community, and we love paying it forward to the families that have come after us.
Laura and Tiny Hero Ava
Our Tiny Hero was diagnosed at 30 weeks, and she was designated to be delivered in Fort Worth, Texas. After our fetal MRI, we found out it was much worse than expected, so we decided to relocate at 36 weeks to Johns Hopkins All Children’s Hospital. She was born and was immediately put on ECMO within 30 minutes of life. She had her CDH repaired before she was even 12 hours old. She was unique because both sides of her diaphragm were affected – the left side was severe CDH, and the right side was eventrated. She was on ECMO for 22 days and intubated for six weeks. She had lots of unexpected ups and downs, and she was discharged after 136 days. She inspires us with her resiliency to overcome all odds. We are in awe of how far she has come. We are so in love with her fun-loving personality — her smile can brighten up any room!
Tiny Hero helped us by sending us the initial care package and providing contact info for the hospital where we wanted a second opinion. We received grant money, which was essential when we had to relocate unexpectedly at 36 weeks across the country. Additionally, we have met numerous families through Tiny Hero, who are now our lifelong friends!
Tiny Hero guided us through learning about CDH, finding the right hospital, and seeking support during hospitalization. We wanted to pay it forward so that the foundation can continue to offer the same support to other families. Last year, we fundraised for Team Tiny Hero by sharing our fundraising page on Facebook. Our donors loved knowing that Tiny Hero helped us in our CDH journey and that it would also help future families. We loved raising money for a cause we are passionate about and helping future families who receive this life-altering diagnosis.
About the Author
Alyssa Sosnik has been with Tiny Hero since early 2023 as their Fundraising Programs Manager. She is honored to professionally serve the organization that was so instrumental in giving her family hope after a CDH diagnosis forever changed their lives in 2021. Her first daughter, Heidi, was born and received treatment for severe LCDH at Johns Hopkins All Children’s Hospital in St. Petersburg, FL. CDH has become an integral part of her life - increasing CDH awareness and raising funds to support other families in their own CDH journeys are great passions of hers!