- Personal Fundraisers
- Decker Cyrus Aghili
01/01/2022 - 01/01/2023
Our journey with osteogenesis imperfecta (OI) started early in our pregnancy around 20 weeks. At 32 weeks the diagnosis was confirmed through genetic testing, showing a mutation in a gene associated with the disorder. This change in his genetic code was undocumented, so we were presented with a large range of potential outcomes after his birth. We knew our lil guy was a fighter so we prepared with our team to give him the best chance since the future was unknown. On January 4th, 2022 our Decker Cyrus Aghili entered the world at 11:30am weighing 7lbs 14oz, making us a family of 3. He was beautiful and he was breathing, but unfortunately this disorder was too much for him to take on. He passed in our arms surrounded by as much love as we could give him in that moment. The chubby cheeks and charming head of hair we had seen for so many weeks were real, and he was ours, even if it was for a short time.
Our first born was taken from us too soon, but it is our hope that his uniqueness can help further the understanding of OI, and help future families facing this disorder. It can be a scary and lonely place dealing with something so rare, but it does not have to be. The show of support from our family and friends brings to light how special Decker was to be loved by so many who hadn’t even met him and we are so thankful he was ours. Many have asked how they can support our family. We are fortunate to have jobs that support us physically, mentally and financially, we only ask the following: Please help us keep Decker’s memory and legacy alive by donating to this cause whose goal is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness, and mutual support.
We love you to the moon and back Baby D
-Mom and Dad
