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 ...
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.
Once we learned my son Lucas’ diagnosis of http://themenkesfoundation.org/, 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 r...
