Our daughter Noella, or most people know as Noe, was diagnosed with a chromosome disorder called 18q Deletion Syndrome in March of 2020. 18 Q Deletion Syndrome affects 1 in 55,000 births, and is a rare chromosomal disorder that occurs when part of chromosome 18s long arm (q) is deleted. This condition can have a highly variable phenotype, with symptoms that can range in severity and include global developmental delays, short stature, hypotonia (or poor muscle tone), hearing impairment, dysmophic features, growth hormone deficiency, malformations of hands and feet, and more. It took many doctors visits and unanswered questions before we learned that there aren't many answers out there. Instead, we have had to lean into who the Lord says Noella will be. It has been a hard journey but it has been so rewarding seeing her grow and achieve without a ceiling placed on her. 

As a result of her diagnosis, we as her parents, have learned to grow and guide, protect and advocate, and most of all share her testimony to the best of our ability.

In 2021 we began our journey in fundraising & in April of 2022 we hosted our first 5K event.Our mission with Walk With Noe is to raise awareness and spread support for everyone with rare diseases, specifically with Noella's rare disease, 18Q- Syndrome. We have many exciting plans for the funds we raise such as helping special needs families in our community, families everywhere with children with chromosome disorders, as well as donating for continued research for rare diseases. We are thrilled for this year's 5K event and we are so excited to have y'all join us as we continue to walk with Noe.