My oldest child is 10 years old. I had him when I was 20 years old.
My second child is my daughter and she is 4 years old.
My third child Remylee was born 8/20/2019. When she was 4 days old we got a phone call that her newborn screening came back showing that she had SCID (Severe Combined Immunodeficiency). She had little to no immune system to even fight off a common cold.
We spent over the next month at Rady’s Children Hospital trying to find the best treatment for her and to keep her healthy. We eventually were able to go home and spent a few weeks there in continued isolation.
On 11/9/2019 I found Remylee unresponsive. I called 911 and performed CPR until the medics arrived and took her to the nearest hospital. They were able to stabilize her enough to life flight her to Rady’s Children’s Hospital and it was there where she was also diagnosed with Mitochondrial Disease.
The cells in her body did not have the energy to keep her organs functioning. She was diagnosed with COQ2 synthesis due to 2 mutations passed from my husband and I. After our daughter was in the PICU for 12 days she passed away due to respiratory failure. She was 3 months old.
In September 2021 I found out we were pregnant with our 4th child, which was a complete shock since I had an IUD in place. I had my IUD removed at 5 weeks pregnant which is a 50/50 chance of miscarriage. I followed up the next week and baby had a heart beat.
We had amniocentesis at 16 weeks to check for the genetic mutations that caused our daughters Mitochondrial Disease. It took almost two months to get all the testing back which they tested for everything possible.
We got the best news that we could have ever hoped for and that was that with our fourth baby just like our second daughter we did not pass down either of those mutations.
We found out that we are having another baby girl and she is due in May 2022.
Read more about SCID (Severe Combined Immunodeficiency) here.
Photos taken by Bella Luce Photography.
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