CJ Farr's Story:
 

On Monday, May 5th of last year, I picked up the phone and called a stranger.  When she answered the phone, I said to her, "this is Amy Magyar, is my son going to die?"  That stranger and I began to cry.  I was still in shock and dismay over the recent news that Mitchell was born with a urea cycle disorder.  The stranger was reliving the moments when her son was diagnosed with a urea cycle disorder four years earlier.  Through her tears, she said to me, you must meet my son.  He is vibrant and energetic and wonderful.  He will convince you that Mitchell will survive.
 
That stranger was Jennifer Farr.  That little boy that convinced me that my son would survive, was CJ Farr. The Farr's are no longer strangers to us, but rather our saviors.  They have opened their hearts to us and have shown us that it is possible to live with a urea cycle disorder.
 
Each and every day, the entire Farr family gives Mitchell, CJ, and all other individuals battling urea cycle disorders a better chance of survival by raising awareness regarding urea cycle disorders and raising funds for research that will hopefully lead to a cure.  Each year, the Farr's host two fundraisers; a dinner and a Fun Day.  100% of all donations from their fundraising efforts are dedicated to assisting them in reaching their mission and goals, which include:
 
. Support funding for educating health care professionals
. Help stimulate and support research in an effort to discover new
  treatments and/or a cure
. Educate individuals and increase public awareness
CJ was diagnosed with a urea cycle disorder, OTC, shortly after his first birthday.  Only the second case of OTC seen by his doctors and the Children's Hospital, many errors were made in his diagnosis.  Five years later, on many occasions, the doctors continue to struggle to maintain stable metabolic conditions, for CJ, during times of crisis. Because, despite C.J.'s expensive daily medicines and formulas and his parents diligent monitoring of his protein intake, his body's careful balance can very easily be knocked askew. The culprit can be a minor illness, such as a fever; or a bit too much or too little protein; or seemingly nothing at all. OTC is one of the most difficult urea cycle disorders, in regards to maintaining the body's metabolic stability.
 
Through it all, the Farr's feel blessed and know that C.J. helps them keep everything in perspective. "We're very thankful because we know things could have been different," Farr said. "When my husband and I are stressing out about something, we just look at each other and say, "It could be worse."
 

Debi West's Story

Debi West is a phenomenal woman. a mother who lost her beautiful son, Croy, to a Urea Cycle disorder, refuses to sink in her grief. Instead, she lives her life by the motto T.G.I.T..."Thank God It's Today".

Please watch this amazing video that depicts the work Debi is doing to fund research and honor Croy's memory, through art.

http://www.youtube.com/watch?v=j1qACukCv_4&feature=player_embedded

Urea Cycle Disorders (like the one our own Mitchell lives with) are rare....so they do not receive the funding for research that other, more prevalent, disorders receive. Nearly all of the funding for a cure is done through the amazing fundraising and awareness campaigns of people like Debi...and the families of those affected.

If you feel compelled to help, please send a donation to the National Urea Cycle Disorders Foundation in memory of Croy.

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