Jonah Vernon Ritterbush was born on February 3, 2013. Jonah’s fight with a mitochondrial disease is believed to have started before he was even born. After having an increased level of AFP and a level II ultrasound that cleared Jonah of Spina Bifida, the doctors had concerns about Jonah’s growth. He was in a low percentile for weight and his percentile continued to fall as we got closer to his due date. We were blessed with our beautiful son at 36 weeks, 2 days. Jonah weighed 4 pounds, 7 ounces and he was 18 inches long.
After Jonah’s birth, it was within a matter of hours that the nurses became concerned with Jonah’s low temperature. Although the concern with his temperature was thought to be due to his low birth weight and his lack of body fat, Jonah was admitted to the Neonatal Intensive Care Unit, for what we thought would be “a couple of hours.” On day two of Jonah’s stay in the NICU, we were approached by the neonatologist who broke the news to us that they suspected Jonah had a metabolic disorder – a disorder in which many children do not survive.
Throughout Jonah’s 67 days of life, he underwent echocardiograms, abdominal ultrasounds, renal ultrasounds, chest x-rays, MRIs, IVs, a central line and constant blood draws. He had numerous tests, all of which came back normal. Jonah had significant difficulty with oral feedings and he was fed through a nasogastric feeding tube. Despite being fed through the NG tube, he continued to have difficulty putting on weight. Jonah’s breast milk was fortified to add additional calories into his diet, but he did not tolerate the fortifier and he had issues metabolizing the calcium. Jonah had issues with unexplained spitting up. His blood tests showed abnormal levels of amino acids, organic acids and lactic acid. The nurses and the doctors often commented on Jonah’s “low tone.” Jonah had the doctors stumped. He “wasn’t going by the books” for any specific disorders. A Mitochondrial disease was suspected.
Jonah was never able to come home from the hospital. On April 11, 2013, in the arms of his parents and surrounded by family, Jonah lost his battle with a Mitochondrial disease. Jonah’s cause of death was Severe Lactic Acidosis and an Inborn Error of Metabolism. A muscle biopsy that was taken after Jonah died, has confirmed a Mitochondrial disease. DNA tests are still pending and we are hoping to find out which specific Mito disease took our son’s life. Throughout all of the ups and downs, Jonah is the one who provided us with strength and optimism. He was fighting and he was strong. He was resilient.
The United Mitochondrial Disease Foundation (UMDF) was formed by families affected by mitochondrial disease. The UMDF provides support to families and funds mitochondrial disease research. Since 1996, the UMDF has funded nearly $11 million in research projects aimed at finding better treatments for mitochondrial diseases, with the ultimate goal of a cure. This research has increased the understanding of mitochondrial function, improved diagnosis and moved us closer to treatments and, ultimately, a cure for those who face this devastating disease.
Grants have supported research for one to three years at institutions across the United States, Canada, Europe, and Australia. Recently, projects have included studying what mechanisms in abnormal mitochondria cause muscle dysfunction, enzyme replacement therapy and other potential treatments, as well as developing models for specific mitochondrial disorders.
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 fatal symptoms. Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine, we now know the disease is approaching the frequency of childhood cancers. Many people who suffer from mitochondrial disease are frequently misdiagnosed due to a lack of specialists. This is why we need your support.
Through research, the medical world will one day have the resources to help children like Jonah. Until then, please help his family and the UMDF “redefine hope” for everyone affected by mitochondrial disease through a donation to the Jonah Ritterbush Research Fund.
Since losing our son, we are committed to honoring his life and to raising awareness of this disease that we had never heard of. Please help us in our efforts to prevent other children and families from having to experience the pain and sorrow caused by mitochondrial disease. Please help us honor the life of our son. Jonah was a gift from God and he brought immeasurable joy and happiness into our lives. He is greatly missed.
Thank you for your support!
Mark and Dana Ritterbush