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Menkes Disease stories
Leland is my 9 month old baby boy who was diagnosed with Menkes on March 4 2016 he was born with low body temp crazy kinky hair light skin pigment skull deformed and very loose skin. At 8 weeks ago he started having ear infection and just constantly ...
Views: 721 Mar 31, 2016, 8:01 PM by Brandy Stewart
My son, Matthew, was born July 31, 2009. At ten weeks old he began having seizures. After a month and a half of doctor visits and hospital stays, he was diagnosed with Menkes Disease. He passed away on May 20,2012. He was the light of our lives. ...
Views: 665 Feb 10, 2017, 3:39 PM by Whitney
Once we learned my son Lucas’ diagnosis of Menkes syndrome, all our expectations went out the window. It was devastating. But it was also liberating. We had to learn that any disappointment we felt was due to comparing our new reality w...
Views: 541 Dec 18, 2015, 1:04 PM by Lucas
I´m a single-mum of little Marty (* May´14). When he was 9months old we have been told he´s a menkes-boy.
Views: 506 Jan 10, 2016, 4:20 PM by Marty Louis
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