Share a positive example of the effects of research on children
and/or families: Perhaps you can provide real-life examples of research
benefits to children and/or families; maybe you are familiar with stories of
people who have been positively affected by research; or you came across a
published research article concerning children or families which you find
exciting and would like to share with your colleagues.
Personal Reflection
I memorized each of the
road signs on the highway like the back of my hand by my senior year of college,
not from bi-weekly visits home. But
instead by the distance traveled so frequently to see my niece that was passing
away from a very rare disorder. A
disorder that would take away the privileges of a mother and father watch their
daughter take her first steps, go to Kindergarten, graduate high school, and
walk her down the aisle to be married.
I recall my sister taking
her to urgent care when Alie was only 2 months old. Urgent care rushed her to the ER. The ER rushed her to Children's Hospital by
air. And within a matter of hours, my
sister sat hearing news about her daughter that changed our lives forever. Her husband, then serving our country in war,
heard about it through skype. Can you
imagine? No, I can't!
At the hospital we were
told that Alie would probably not make it to be 3 months old. It was that moment that life became, do whatever
you need to do in order to keep her alive.
Try whatever you need to try to keep her alive. Through these studies and research trials,
Alie lived to be 16 months old. My
senior year of college, I spent 3 months driving home twice a week thinking
"this is the last time I am going to see her." Horrific.
While a cure has not been
found for Alie's disorder, we were given a gift of an extra year that the
doctors didn't think we would have due to research studies and explorations. While
some research benefits are monetary, when you are a family of a loved one that has
been diagnosed with an incurable disease; some research benefits become another
breathe.
I was so moved by your story about sweet Alie. I can't imagine how difficult that time was for your family and I appreciate you sharing this with us. I have a niece that has suffered with Asthma since she was an infant. I remember spending more time in ICU and Children's healthcare of Atlanta then at my own home. It is hard to watch someone you love in pain, but it is especially hard when it is a child. My niece will be 10 this Wednesday and she still struggles with her asthma, but it has gotten a lot better. Her doctors worked hard to try and find what would work for her and we had to go through a lot of trial and error to get that right dose. I pray that the next child that comes along they won't have to endure all that my niece went through.
ReplyDeleteThank you for this beautiful post!
Keli