Little UNknown fact: Menkes is also known as Menkes Kinky Hair Syndrome (KHS)which is characterized by strikingly peculiar hair, which is kinky, colorless or steel-colored, and easily broken. This is a shot of what little hair Cannon has but it is definitely all of those things.
1 comment:
Wow, now we are learning about Menkes. I have been wanting to look it up but Cannon is now helping us learn about it. Hopefully, your posts will help find a family that is dealing with this disease just like you stated in your blog. People going through the same situations and helping others to understand more as we experience those same problems is powerful. Brad and Erin found a great mentor in a young man named Ben who was also palsy. As Ben crossed the finished line of his 9-hour race when the others had finished in half the time, Tyler happened to be there as Ben put his arms in the air in triumph. Ben saw Tyler and gave him his medal and they became instant and long-time friends. Ben helped us all understand what Tyler is dealing with. If you have a moment, watch this moving video that our family loved so much. Who would have thought Tyler would bump into Ben. I know the Lord helps sustain us thanks to the good people around every day. It was very meaningful to fast for Cannon yesterday. Love, Bev
http://web.mac.com/bradboyle/iWeb/Site/Ben%20and%20Tyler%20KSL.html
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