Hi All!
I hope everyone is doing well as half of October has passed already. October has been designated as Rett Syndrome Awareness Month, and I felt compelled to share with you what Our Aly faces on a daily basis. Days are difficult for our sweet Aly who is in Stage IV of this very debilitating syndrome which has taken away her voice and her mobility leaving her with a compromised immunity and in fragile health. However, her smiles are treasures to all of us in her family, and we seek to please her until she gives us a sweet giggle and smile. Aly finds pleasure in the most simple things like when her siblings sit next to her, like reading Angelina books, like watching Disney princess videos, and like taking a short drive or walk around the neighborhood. When our girl is well, she sleeps throughout the morning but awakens to spend time with our family when the rest of the children return home from school. Aly also works very hard with her home-bound teacher for two hours twice a week. Everyday, Aly takes many medicines to help with seizures, reflux, and her breathing. She also receives all of her nutrition through a feeding tube. On her hardest days, Aly might not smile at us at all, but her eyes still show incredible trust and love.
This is just a glimpse of Aly's life. It's my hope that each of you might be touched in a positive way by our Aly's sweet angel-spirit as we have been in her family. It's also our hope to find a cure for Rett Syndrome and reverse the devastating symptoms that plague Aly each day. This cure is not a lofty dream, either. Research is moving towards a cure and the goal is to realize it in five years. Please click on the links that explain everything in detail. When there is a cure for Rett Syndrome, many other diseases such as autism and Parkinson's will find remedy as well. And if you're able, please donate towards research.
http://www.rsrt.org/donors/face-to-face-with-Rett-Syndrome.html
http://www.rettsyndrome.org/index.php?option=com_content&task=view&id=14&Itemid=375
Thanks for letting me share about our Aly. The months ahead present challenges for our girl as the weather turns colder and illnesses like flu, pneumonia, and colds begin to affect the health of everyone. Please keep her and our family in your prayers during the next three months. We whole-heartily believe that if we can keep Aly healthy and alive that she will experience healing with the cure of Rett Syndrome.
It's in the heart of God and in the hands of man,
Mindy & the Rumuly 7
William, Mason-12,Aly-9,Ethan-7,Kassidy-5,and Camden-5
