Menkes Friends

Share your Story!

Contact Us



This is my son’s life…

Jacob was born on August 9th 1998, a healthy little baby until he turned 3 months old. We kept going to the hospital on and off trying to determine what was ailing our son. We even had to travel to a Hospital in Dallas where we were told that my baby had Menkes Syndrome. We had never heard of this disease and were very scared to learn that our son was only expected to live 3 years.

So we did everything we could to make our son happy and calm with no pain or suffering. Three years came and went in which he was a good little boy having fun playing with all his friends at school and even swimming. He was enjoying his 3rd birthday and as days went by and we were like “hey our son is going to live for a very long time.” Even his doctors were surprised with his progress.

He looks like a little healthy kid who loves the outdoors and loves being around a lot of people. My son is now going on his 10th birthday soon. On his 9th birthday we got the shock of our lives when we almost lost him. His left lung had collapsed and he was rushed to the hospital. They told us he might not make it. We were doing everything we could to keep him happy and comfortable by doing the same things we did since he was small.

Our son is a fighter and continued to do so during this hospitalization. It was very hard for me to not be able to hold him for a whole month due to his tubes draining all the bad blood from him. So we had to wait until it was okay and when that day came I was so happy to hold him I did not want to put him down for one minute. I cried tears of joy, for this was the first time that I was really scared that I was not going to be able to have our son home with us.

One month went by and they told us he could go home but we had to be very careful with him in monitoring his pain and breathing This is what we have been doing so now that his birthday is coming we are thinking of give our son a big party for his birthday. It will be a sad one and a very happy one at the same time. We will be very grateful that we have him but at the same time we will remember that we almost lost him too on this day.

So here’s to you Jacob W. Quast! We love you and we know you will be with us for a very long time. We are very proud of you and always will be. You are my hero and my inspiration!

Jacob's Mommy Dolores,

Posted: April, 2008

© 2007 The Menkes Foundation