The parents of a Kalamazoo, Michigan baby are asking for prayers and donations to help keep their son alive. Four-month-old Russell Cruzan III, nicknamed Bubby, was diagnosed with Mitochondrial DNA Depletion Syndrome 13, an extremely rare and fatal disease that usually claims the lives of its victims by age two. The condition causes an unhealthy DNA component to rapidly reproduce, leading to muscle deterioration and brain damage.
It is almost the exact same condition that killed Charlie Gard, the 11-month-old British boy whose parents fought with their government to take their son to the United States for experimental treatment. In that case, after months of legal wrangling, an American doctor traveled to Britain to examine Charlie and determined by that time there was virtually nothing that could be done to help the baby. Charlie's parents contend if the government had allowed Charlie to pursue experimental treatment sooner, their son might be alive today.
In both Charlie's and Bubby's cases, early treatment intervention appears to be crucial. The big difference is the government is not standing in the way of Bubby's treatment. But money could be. It's unclear whether insurance will cover Bubby's treatment, and if so, how much. Then there are the added expenses associated with things like travel and lodging.
Bubby's mother, Michelle Budnik-Nap, created a Facebook page, describing it as "a prayer group for our sweet boy," adding, "Thank you all for your continued thoughts and prayers for our sweet boy and our fight for treatment!!" The public page is called Bubs' Prayer Warriors. In addition to prayers, she's asking for financial donations to help fund expenses associated with her son's treatment.
She and Bubby's father, Russell Cruzan, Jr., say their next step is consulting with Dr. Irina Anselm, the director of the Mitochondrial Program and co-director of the Neuromatabolic Program at Boston Children's Hospital. They will reportedly be pursuing the experimental medication, dichloroacetate (DCA). According to the hospital website, DCA is for "patients whose mitochondrial disease has caused lactic acidosis, a condition in which there is too much lactate in the blood and spinal fluid."
Speaking of Boston Children's Hospital, Michelle posted, "They have already received Bubs' records and have agreed to see him and evaluate his case for DCA treatment," adding, "It is looking like his only chance for treatment."
In addition to the Facebook page, Bubby's parents also created a YouCaring page on which they posted, "We were told there was no treatment and to take our son home to enjoy the time we have with him, as the disease typically takes children in early childhood. We have since learned that there IS experimental treatment out there that has shown GREAT success in others with similar conditions."