Charlie Gard case: What causes the baby’s rare disease?
Charlie Gard is suffering from encephalomyopathic mitochondrial DNA depletion syndrome. It’s so rare the National Institutes of Health say only 15 infants have it in the world. Find out what causes it
A 4-month-old Michigan boy diagnosed with a life-threatening disease similar to what 11-month-old Charlie Gard faced is in a race against time, as his parents seek to raise enough funds for an experimental treatment in Boston.
Russell "Bubs" Cruzan III was diagnosed with Mitochondrial DNA Depletion Syndrome 13, which is a multi-system disorder that causes developmental delays, failure to thrive, difficulties feeding and may progress to a range of neurological disorders. While survival varies, the median age of reported deaths is around two years old, according to the National Center for Biotechnology Information.
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Doctors had told the boy's parents, Russell Cruzan II and Michelle Budnik-Nab, that there was nothing they could do for him but make him comfortable.
“When we came in to get the diagnosis they just said there’s no treatment, there’s no cure,” Budnik-Nab told WWMT.com. “We would encourage you to take Russell home and enjoy the time that you have with him.”
Russell has already been rushed to Bronson Children’s Hospital for dehydration and low body temperature and was released, only to be rushed back two days later with severe respiratory problems that required a month of hospitalization, WOODTV.com reported.
“We know the seriousness of this diagnosis,” Budnik-Nap told WOODTV.com. “We know what the prognosis is.”
Russell’s case is similar to Charlie Gard’s, although the variation differs slightly. Charlie died on Friday, a week shy of his first birthday, after a months-long legal battle between the hospital and his parents captured worldwide attention. His parents, Chris Gard and Connie Yates, had fought to bring him to the United States for an experimental medical treatment. They withdrew their bid after Dr. Michio Hirano, of Columbia University Medical Center, who Budnik-Nap hoped to secure an appointment with, visited and determined treatment would provide a slim chance of improvement.
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Budnik-Nap, whose "Bubs' Prayer Warriors" Facebook group has been flooded with messages of hope from many of Charlie’s supporters, said they were faced with the decision to keep fighting for Russell, or allow the disease to take hold.
“But I always tell them, ‘No, we want to do everything we can. We want to fight,’” she told the news outlet.
Part of their fight includes securing at an appointment at Boston Children’s Hospital to explore an experimental treatment that may help Russell. Budnik-Nap has detailed many of their plans on the Facebook page, which includes hopes of consulting with the Dr. Irina Anselm, the director of the Mitochondrial Program and co-director of the Neuromatabolic Program at Boston Children’s Hospital.
According to WOODTV.com, Boston Children’s Hospital will accept Russell as a patient if Bronson Children’s Hospital can get the insurance company to authorize a transfer.
A YouCaring page to help cover the family’s travel expenses and treatment not covered by insurance has raised more than $4,000.
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