Isabella “Ella” Magee was born in Tulsa, Ok on August 21, 2008. She was beautiful and healthy and everything that we prayed for. She had colic for a few months, but grew out of it and was smiley, happy and incredibly chatty most of the time. We celebrated the holidays with her in tow and she did wonderful, loving the attention with every stop.
December 30th, 2008, we had taken Ella to the doctor earlier in the week and was diagnosed with an ear infection and given antibiotics. The evening of December 29th, she began to vomit and cry uncontrollably. This was concerning to us, so the next morning we took her to SJ Owasso. An IV was started and blood work and x-rays were taken. They thought she needed a test that they were not equipped to do, so they sent us via EMSA to Children’s in Tulsa. When we got there we were rushed by doctors and nurses and it was like a scene from a movie. I heard the doctors ordering all kinds of things and heard him order a room for her and to get the doctor on the phone so he could tell them what was going on. The nurses took off with her in the bed running to the elevator and told us to wait in the waiting room on the first floor. When we got there it was the Pediatric ICU, the ER doctor forgot to mention it was PICU. I had a horrible feeling that something was incredibly wrong. They brought us in the room and told us they thought she had meningitis. They did more lab, x-rays and a spinal tap all within an hour of her being taken up. She was given pain meds that pretty much put her into a coma. We spent 10 days in the hospital giving her antibiotics, with the doctors drawing blood from her everyday, and often drew the max amount that could be taken from her tiny body. She had good and bad days. We thought we were getting close to going home since her antibiotics were done. The doctors noticed that her liver was not functioning like it should and she was incredibly hypoglycemic. When the numbers did not get better, we mentioned that we had a family member who lost 2 babies to Mitochondrial DNA depletion. They called in the geneticist and some other specialists. A liver and muscle biopsy was done as well as DNA sequencing. She stabilized and we were sent home after 3 weeks.
Once we were home, we got back in routine and she seemed to be thriving. On Feb 2, 2009 we got the call that it was indeed Mitochondrial DNA depletion and suspect Alpers and that it was considered “incompatible with life.” We knew our time was fleeting and vowed to make her as comfortable as possible for the rest of her days. She did seem to be losing weight and not thriving like she should. March 09, we decided to have a feeding tube placed. The surgery went well and we were released as planned. The evening we were released we noticed her twitching on one side, we took her to the ER and she was admitted again to the PICU with seizures, which confirmed the Alpers diagnosis.. We lost her shortly after the seizures began. The meds they gave her knocked her out and she was never the same. She lost all of her strength and was completely still, not even the strength to move her little neck. She fought until the middle of May, we noticed her taking more shallow breaths and just appearing exhausted. She passed inpatient back in the Children’s hospital on May 19th, 2009. Mitochondrial disease robbed us of our only daughter, of the baby we fought for and prayed for. We miss and love her so much. She is in our hearts forever and we will pray and try to help find a cure for this disease as long as there is breath left in us. The average life expectancy for those who are diagnosed with Mitochondrial DNA depletion is only nine months old. Ella was only two days shy from 9 months when she passed.
The UMDF was formed by families affected by mitochondrial disease. Like the Magee family, the UMDF founders wanted to help others affected by the disorder. The Foundation provides support to families and funds research into mitochondrial disease.
Mitochondria produce more than 90 percent of the body’s energy. When these tiny parts of the cell can’t do their job, the body doesn’t get the energy it needs, resulting in a wide range of debilitating and sometimes, as in Ella’s case, fatal symptoms.
Every thirty minutes, a child is born who will develop a mitochondrial disease by age 10. Most of these affected children will not survive beyond their teenage years.
Through research, the medical world one day will have the resources to help parents and their children like Ella win the battle against mitochondrial disease. Until then, please help the Magee family and the UMDF bring “Hope. Energy. Life” to everyone affected by mitochondrial disease by donating.