By Marlene Schwan | Administrator
Dear Friend,
You subscribed to email updates from Send family to conference for rare disorder! by Dup15q Alliance, a project on GlobalGiving. Here's the unedited update from the field:
Project Report
By Marlene Schwan - Administrator
Hi GlobalGiving donors! One dup15q mom tells it best:
Three whole days dedicated to this condition, which my son had been diagnosed just one month prior? A month that shook us to our core, not only because we knew our life would neither be the same nor what we had thought it would be, but also beacuase of the helplessness that even in the "Google-It" era it seemed there were few answers to be found.
Day One: It suddenly became so real, so fast. I looked up and saw a little boy who looks so much like mine. An arrow shot straight to my heart.
Day Two: As soon as I got to our room that night - head spinning - I could digest the day with one thought only: we had to enjoy every minute of our life because there would be no other way to this through this.
Day Three: I felt a deep sense of gratitude to the families of older children that had pioneered these efforts and to the Dup15q Alliance leaders who selflessly offered their time. The energy was powerful and uplifting.
Dup15q syndrome is a rare disorder and it is often difficult for families to find fellowship and resources. The conference provides a chance for families to connect with others who are on dealing with similar issues every day and learn about cutting-edge research and treatments. Learn more about chromosome 15q11.2-13.1 duplication syndrome at www.dup15q.org.
Thank you!
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