The Rett Monster vs. Aly Angel

Oh Boy! It's been a rough week for our Aly, suffering with unstable oxygen saturation levels,tachycardia, and now adding a persistent congested cough. At one point when we had Aly at the doctor and Nana picked up the children from school with Cam, the kids questioned if Aly was once again in the hospital! And as hard it is to see our precious girl suffer, we have been so blessed to keep her home with us through this tough week. Knowing that Aly could return to the hospital if things get worse, makes keeping her home seem like such a gift to be together.

What about this Rett Monster? Since October is Rett Awareness Month and it's almost Halloween, I must take this opportunity to share with everyone a little more about Rett Syndrome, the name given to the monster that plagues our girl and our family. I hope you've read this and this to become more familiar with the Rett Monster (click on this and this to learn more) but there's more I need to share:

1. There are four stages of Rett - Aly is in the fourth and final stage.
2. Rett can be caused by these three gene mutations, MECP2, CDKL5, and FOXG1 - Aly tests negative for MECP2 and has not had further testing.
3. The severity of Rett differs in girls and recently more boys are getting diagnosed with a form of these mutations - Aly has the most severe form.
4. Rett is NOT hereditary, except when it runs in families - Confusing, I know.
5. Rett is the MOST severe form of autism, although it may not be classified under the Autism Spectrum Disorder umbrella forever.
6. Rett WILL be the first REVERSIBLE neurological disorder - clinical testing has successfully reversed Rett symptoms in mice with the MECP2 mutation.
7. Rett actually does not kill; it maims - Aly suffers from the "process" of her body's deterioration making her lose skills and bodily functions; her brain remains unmarked but with atrophy.
8. Pneumonia kills some girls with Rett - That's why it is so serious when Aly is sick.
9. Rett does not mean retarded - Preferring to call it intellectual disability, many people are classified mentally retarded because they are non verbal and unable to speak. Check this out to amaze yourself about what might be going on in Aly's mind. (Click on this.)
10. Rett is a monster - Aly is an angel!

Tonight, Aly has started running a low-grade fever. We will see what this night might bring our girl, but the morning will arrive for all of us. We will defeat the Rett Monster some day soon; we pray selfishly that it will happen on earth before our Aly gets her official angel wings. If you're led, please consider a donation to help find a cure. (Click on donation and cure for information.) Thanks for praying for us. M&R7