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| photos by julia wade |
In celebration of October being Rett Syndrome Awareness month....
I am spot lighting a mom who inspires me.
She is amazing.... she always has been. She used to be my neighbor. Her entries in her blog makes me want to laugh and cry all at the same time.
Her name is Maren ...
her daughter is Leah...
and she was diagnosed with Rett Syndrome.
What is Rett?
It is almost always seen in girls.
Occurs 1 of every 10,00 to 23,000 female births.
It strikes all racial and ethnic groups.
Symptoms appear after a period of normal development of six to eighteen months of life.
From then on there begins a regression of communication skills and purposeful use of her hands.
Maren inspires me. Honest and well-written are her blog entries, and I find myself pouring over them day after day. She talks about the trials and blessings that being a "rett mom" brings... and I can't help but think..."Wow she is so couragous and strong."
I am creating a list of questions to ask Maren and would love if you would join. Get to know her better by hopping over to her blog here and then email (cristidame@gmail.com) me or leave a comment below with your question.
Stay tuned for her answers!
Stay tuned for her answers!
P.S. SAVE THE DATE: December 16th we are hosting a Rett Syndrome Benefit Concert with Mindy Gledhill in Boise.
besitos, xoxo
Photos done by Julia Wade Photography: http://www.julia-wade.com/site/#/home
Posts
What?! So excited for the benefit concert, I looove Mindy Gledhill. Thanks for bringing her to Boise!
ReplyDeleteWELL DESERVED MOM OF THE MONTH NICE SPOTLIGHT
ReplyDeleteYup Mindy is coming out!
ReplyDeleteAlso-I need questions for Maren people!! Any questions!
Love Mindy, too! Very cool to host a concert, but very uncool to have the concert in Boise (being that I'm in SLC). Kudos to Maren! I read a bit of her blog. Motherhood is already a challenge and adding illness to the equation can definitely add to your stress level! I, too often, take for granted that I have "healthy" children. A couple of questions: 1- What has been the one thing that has helped you "cope" or "deal" with having a child with a disease that has no cure? 2- How has having a child with Rett's been a positive experience?
ReplyDeleteThanks for the questions! Those are really great! Keep em coming!
ReplyDelete