A family from Evansburg, Alta., with three children who have been diagnosed with the rare and fatal Batten disease has been given a new kind of hope due to an older medication.
A family from Evansburg, Alta., with three children who have been diagnosed with the rare and fatalMembers of the Lamprecht family said they were told the chances of three of their four children having this condition is one-in-eight-billion. Batten disease is something Kiara, 12, Hannah, 10, and AJ, seven, are living with. The two girls have a different mother than AJ.
“We think his gene is a deletion and mine is a deletion, whereas the girl’s mum is maybe a mutation,” said Katie Lamprecht, AJ’s biological mother.The Lamprecht family has been travelling the world for the last two-and-a-half years with the hope of finding some sort of treatment for the children. While that trial ran out of funding, the family found another source of hope: a medication called Miglustat.Miglustat is a drug that was created for Gaucher’s disease, a rare genetic disorder that prevents the body from breaking down lipids.COURTESY: Lamprecht family
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