The baby of his family, Asher was born in October 2018. While his Mom Michele said she had a pretty normal pregnancy, the birthing experience and the years since have been anything but normal.
In labor, Asher’s heart rate dropped to 70 beats per minute indicating he was in distress. A medical team rushed the room and shortly thereafter, Michele was put under general anesthesia for an emergency c-section. Three hours later, she awoke and was transported to the Neonatal Intensive Care Unit (NICU) to visit Asher. The first thing she noticed was how tiny he was at just 4 lbs and 15 oz. This was concerning considering he was born after his due date. She also recalls that his skin looked like loose pantyhose.
Within hours of his arrival, doctors and nurses knew something was wrong. Asher couldn’t eat, he was having trouble breathing and his blood work was off-the-charts irregular. For instance, his lactate was at 24 when it should be less than 1.2.
He was air lifted to Children’s Memorial Hermann Hospital for further evaluation. After several tests that ruled out heart, lung and intestine issues, Asher and his parents Michele and Aaron, underwent genetic testing.
Weeks later they had an answer – Mitochondrial Complex 1 Deficiency. In layman’s terms, Asher’s body struggled to convert food into energy that his cells needed to survive. He went home with a feeding tube and two very determined parents who wanted to give him a normal life.
The next months were a blur of medical appointments including speech and physical therapy in an effort to get Asher to take a bottle. However, his primary method of nutrition came from an IV or a NG-Tube. Even with the support of these medical devices, Asher failed to gain weight and vomited continuously.
From there, when he wasn’t meeting milestones like being able to control his head and neck muscles, the family searched for answers and found Dr. Mary Kay Koenig, who diagnosed Asher with Leigh syndrome.
Michele and Aaron later discovered they also were carriers of Leigh syndrome. Additionally, Asher’s oldest sibling is a carrier. The middle child is not a carrier and is not affected.
Today, Asher is two years old, and is medically stable and happy, however, he still faces many obstacles and there is no cure in sight.
Please consider making a donation to PALS to give Asher and others affected by Leigh syndrome and other neurological diseases like Parkinson’s, ALS and Alzheimer’s, hope for the future.