The twins, Yoel and Yael, suffer from Canavan Disease. A rare genetic disease which causes brain degeneration.
By JPOST.COM STAFFUpdated: DECEMBER 17, 2018 19:34 Yoel and Yael Llinetsky(photo credit: Courtesy)
Young Israeli parents Gabi and Zohar Ilinetsky were elated when they welcomed their twins, Yoel and Yael, into the world just a few months ago.Gabi noticed one day that Yoel was acting oddly. In order to get to the bottom of the issue, she fought tirelessly to get him the medical attention he needed and get the answer she so desperately desired.In October the results were in and they were tragic.Both twins suffer from Canavan disease, a rare neurological disorder characterized by the degeneration of white matter in the brain.Caused by a genetic mutation in the ASPA gene, Canavan disease occurs most frequently among Ashkenazi Jews.Now Gabi and Zohar fight to save their children by gathering funds to be able to offer them innovative medical treatments such as gene replacement therapy, customized to treat Canavan disease, as well as Neuro-Movement therapy.The determined parents are working on creating a campaign with Israeli nonprofit Kavla Chayim, so that Israeli donors may earn a tax break for their donations, an option that is currently unavailable.The donations will support a cause that will fund research that will in turn help cure other Jewish genetic diseases, a cause the parents feel most entwined to now, could help save future generations of Jews.As Canavan disease is a degenerative illness, every moment counts.
