Abraham Roy Ehlers has always been both our miracle child and a medical mystery. His story is one that started with great trauma: 18 days in the NICU, including moments early on where he had to fight hard to survive.
Now at age 2, we are still on a journey to have questions answered. We know his story includes an extra chromosome (He was diagnosed with Jacob's Syndrome in the fall of 2024). We know his story includes a mutated gene on the his 3rd chromosome (He was diagnosed with a rare genetic condition called CTNNB1 Syndrome on March 11th of 2025). We know he is fighting hard to learn to crawl, sit, walk, and talk. We know that with every little success comes both great joy in what could be and great sadness in what could have been. We know that he is created in the image of God and full of dignity, purpose, joy, and beauty.
As the newly diagnosed 'dragonfly' we are excited to participate in a community of parents who are resilient, smart, and always advocating for their little ones. So much is unknown about this disease, and this fundraising is our communal attempt at bringing real knowledge, support, and opportunity for all our dragonflies and the many that will come after.
We have been blessed by a committed family and church that has cared greatly for our immediate needs. Giving to this cause will not only help with the formal research and the pursuit of a cure, but also help cut down on costs for families without support networks like ours - making conference costs equitable and accessible to all.
Abe's Most Recent Milestones:
(Tuesday, April 8th 2025): First two syllable word: 'apple'
