Rare Disease Report

Dr Michio Hirano of Columbia University is Examining Charlie Gard in England

JULY 17, 2017
James Radke
Michio Hirano, M.D. of the Department of Neurology at Columbia University is currently in London England to spend 2 days examining Charlie Gard with doctors at Great Ormond Street Hospital.
A second doctor from the United States, who remains nameless for legal reasons, is also with Hirano to participate in the analysis. Hirano was given an honorary contract by the hospital that gives him the same status as its own physicians.
Gard, as RDR has written in the past, has a rare mitochondrial DNA depletion syndrome that has left the 11-month old on life-support.
For the past several months, Gard’s parents and the Great Ormond Street Hospital have been in a legal battle over what is in the child’s best interest. The hospital’s preference is to remove the child from life-support considering his suffering without any viable treatment option to improve his status. Gard’s parents want to take him to the United States to give him an opportunity to undergo an experimental therapy.
It is not clear if Hirano or the other doctor have performed the experimental therapy on other mitochondrial DNA depletion syndrome patients, however, it is known that he is an expert on this particular syndrome and has published several research articles on the subject, most of which, however, involve animal models.
Last week, Judge Nicholas Francis, who originally decided in favor of the hospital’s preference, requested scientific evidence to support the idea that performing the experimental therapy would possible improve the child’s health. The examinations of the next 2 days will likely provide the information needed for the judge to make a final decision on the case.

The case has captured the attention of many in the rare disease community, as well as celebrities and world leaders, from Cher and Paul Ryan, to Pope Francis and President Donald Trump.
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