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Josiah was born on May 12, 2009. From the time he was 6 weeks old, I just knew something was different about him. I had 4 other children and a mother just knows that instinct. It wasnt until Josiah was 4 months old that the doctors finally began to listen to me. We started working with Children's hospital in Pittsburgh when he was 5 months old, But when he was 6 months old his life almost ended way to quickly. Josiah stopped breathing, He was rushed to Children's hospital by life flight. There he spent 10 days in the ICU. They still have yet to figure out what was wrong. After he got better they sent him home, only to discover that 3 weeks later he would stop breathing again. By this time I was very determined that I was not going home until they could tell me what was wrong.

They did finally figure out that he was silent aspirating on his feeds which caused him to stop breathing. They ended up giving him an NJ feeding tube and again sent us home. Genetics was involved by this point. He continued to get sick every single month and it was that one day in March when we were sitting in the hospital that they came in and told us Josiah had Menkes. That will be one day I will never forget in my life. I knew about it already due to the many many hours of research I have looked at online to figure out what was wrong with my son. Actually I am the one who told them to test him for that prior to the results. Josiah is now a year and a half and continues to be in and out of the hospital a lot. God gave us this baby to love and that is what we do, every single day of our lives, we love him and give him the best life we know how to. We will never give up this fight for Josiah. We love you baby boy.

Heather



Posted: January, 2011

 
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