By Amber Weeks
Mommy to Jeremiah Eli
Mitochondrial Disease
March 13 – April 21, 2022
My 3rd child, Emberlee, was born December 26, 2017. A month later, she went to sleep after a bottle at 2:30 a.m. on January 21, 2018 and never woke up.
After that, we had our daughter Isabella with little complication. For our 5th child, I was high risk during pregnancy and his delivery. We brought our son Jeremiah home, but when he was just 12 days old, I woke to find him unresponsive. We were able to get his heartbeat back and he was life flighted to St. Louis. For the next month we fought to get answers on what had caused him to become unresponsive and almost completely brain dead. They performed a different type of MRI and that’s how they got the diagnosis of mitochondrial disease. And I was told that it was likely what took Emberlee’s life as well.
During the month he stayed in Cardinal Glennon Children’s Hospital he never woke up and started to have more complications from the ventilator; his body was shutting down. The MRI proved the condition he had was fatal, and it was just a matter of time before he suffered another cardiac arrest. The hospital offered to contact On Angels’ Wings to come in and take pictures for us before we had to say goodbye.
Jeremiah grew his wings and went to fly with his older sister Emberlee. His surviving siblings and I are learning how to accept their absence while still continuing to honor them and include them in family events every chance we can. I want to raise awareness of their condition and show that they will always be a part of our family.
Having the support of On Angels’ Wings has helped make the unimaginable more survivable. Being able to reach out during the darkest days and knowing someone will respond is awesome. Being able to include the babies memory bears in pictures is amazing.
The pictures and the memorial gifts they provide have helped me make it through our journey. The gift I received around the anniversary of Jeremiah’s death was an amazing reminder that I’m not alone on this journey. If you’re experiencing something similar, please reach out to OAW. The support system they provide is irreplaceable.
