Lance

I want to introduce you to two very special people. Tina is an amazing mom who has a little boy with Menkes. When we first found out that James had Menkes and we were in sheer devastation mode, it was Tina that gave our family hope. She is the first one who reached out to me, the first one who told me exactly how life with James would be. She told me how hard it would be but at the same time she told me how amazing life with a little boy with Menkes would be. She was always a Godsend to our family. I was the only one with a computer and the only link to other people in the Menkes community. She emailed me faithfully, updated me constantly and encouraged me passionately. She urged our family to never give up on James no matter what the medical community said.

When I met Tina her son Lance was 3 1/2 years old. I was amazed. The doctors told us that Menkes children never live to see 1, but here Lance was 3 1/2! Talk about true hope. In my eyes Lance was always a superhero. His mom calls him Superman. I believe he is.

Sadly, Lance lost his battle with Menkes on December 28th. I am devastated at Tina's and her husband's loss. I remember those first few days and weeks as reality set in and how difficult it was. Please pray for their family.

Lance, thank you for being a wonderful inspiration and a true hero. I know you are playing in Heaven with James and all your other Menkes buddies. Watch over mommy & daddy, they need your strength now more than ever.

Click on this link if you'd like to visit Lance and his family.