We read many stories from parents, some make us laugh, many make me cry.  We are sent many messages about ‘a day in the life’, we are sent beautifully touching pictures of children, and it is in the spirit sharing, that I connect you to a beautiful mom who writes about her adorable son Tripp and their daily challenges, due to the fact that little Tripp is affected by Epidermous Bullosa.
To learn more about this debilitating disease, I encourage you to head over to www.debra.org where this amazing organization is working tirelessly to help support those families affected by EB.
I would also like to direct your attention to a brand new contributor to R.A.R.E. Blog, Dr. Brandon Colby, who is a physician and an advocate for rare disease and EB, because he was diagnosed with the disease as a child.
But now, I would like to introduce you to Courtney, whom I have not yet met, but who I hope to very soon . . .
I am from the small town of Ponchatoula, LA. Before I became a Mommy, I worked as a nurse in geriatric/psychiatric. I loved and miss my job, but now that my precious boy is born, I am a 24/7 stay at home Mommy. I dedicate every second of my life to Tripp and I treasure every second that we have together. He makes me smile every day. Though caring for him is a very tough job, I would not trade any of it for a second. Tripp has taught me true love, patience, respect and selflessness. Being a Mommy has changed my life, but being TRIPP’S Mommy has brought so much joy and happiness into my life.  . . read more https://randycourtneytripproth.blogspot.com/2010/10/for-your-eb-awareness-week-i-would-love.html

 

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