Wednesday, October 13, 2010

Scottsville Mom Works to Cure Son’s Disorder

A few weeks ago I was interviewed by Wendy Edwards for an article about why I do what I do. You may read this article here Scottsville Mom Works to Cure Son’s Disorder. It is tremendously important that people know about this.. not too long ago I shared an article on facebook about a young man who died on a protein overdose. 20 year old athlete.. doing the athlete thing - protein protein protein... for some of the people this is a silent killer.. silent? For some the instinct of not liking a certain food may be the hidden disguise of an underlying medical condition. I write about my son's journey here .

When I started the bath & body venture and wanting to give back I decided that the National Urea Cycle Disorder Foundation would be it. They advocate for research and the families impacted by them. The article indicates PKU testing can now be used in order to determine if there is an underlying metabolic genetic disorder, it doesn't have to be a Urea Cycle Disorder - it could be PKU itself or some other from of a disorder. Families impacted deal with a medication regimen, a heavy modified diet - in Lennon's case: protein restriction. Now realize that most anything has some form of protein and it all must be calculated out. In many cases individuals require a special formula to supplement so they still get the amino acids we need to be healthy .. to grow. If I can help find a cure or support a family affected with this disorder to cover medical costs or anything else they may need - well then I have done what I set out to do. I've been blessed and while our journey is far from over, I am glad I have a way of helping someone else.


The Oxford Family said...

I have never heard of this before...thank you for sharing.