“The art of life”

 Debi West is a phenominal woman.

A woman that lost her beautiful boy, Croy, to a Urea Cycle Disorder.

Debi refuses to sink in her grief…but instead lives her life by the motto T.G.I.T….”Thank God It’s Today”…she inspires me more than I can ever say.

Please grab some tissues and watch this amazing video that a student made to share the work she is doing to fund research, and honor Croy’s memory, through art.

Debi, you are my hero.

 Remember, Urea Cycle Disorders (like the one our own little Corrigan 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.

9 thoughts on ““The art of life”

  1. I came over to say hello and welcome to SITS.

    Thank you so much for sharing that video. I thought “nah, I don’t need the tissue…” But 4 tissues later, I became inspired to Thank God It’s Today 🙂

    xoxo

    Like

  2. Oh My Goodness Mindy! Thank you so much for your kind words and for posting this so more people can “know” my Croy and what a living angel he was. I only wish I did as much to promote awareness and raise donations while he was alive. We kept thinking we had beat it. We had him on his diet, on his meds and he was only hospitalized 5 times in 9 years. Unfortunately, the hospital made a “pharmacuetical, mathematical error” (their words!) and gave Croy the wrong dosage of medicine for over 20 hours. His little body couldn’t fight anymore. We MUST raise awareness for this disease and educate the medical community.

    I think of you often and I thank you again!
    So Sincerely,
    Debi West

    Like

  3. I just found your site. My daughter was born on Oct 20th 2009 with Citrullinemia. I would love for you to email me back so we could chat. I have related so much to your page in the past 5 minutes. Debi’s message really touched my heart.

    Like

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