Rett Syndrome

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Ashley's Law

One of the scariest parts of my daughter’s condition, Rett Syndrome, are the seizures. Her seizures had dropped from about 6 a day when she was very young to a much more manageable 2 or 3 a week. Suddenly, she was having more and more. Her neurologist and I could not figure out what was happening. He asked if I could describe the seizures. Better yet, bring him video so he could see them himself. Trying to video someone while they are seizing is hard for many reasons. One of them is you feel like you should be trying to help and not just filming. I asked my now ex husband to help me install some cameras to get video of the seizures. Instead of video of seizures, I caught him raping her.

Her disability is so severe, that she can neither walk or talk. She can barely sit up unassisted. She is in essence, as helpless and dependent on others as an infant.

He had to remove her clothing and her diaper and then dress her again so I would not know.

He was arrested in South Jordan Utah. When it came time for him to be charged, the prosecutor and I realized there is no law in Utah to cover a vulnerable adult. If she were a child, or if she was elderly, the crime would be considered more heinous and would carry a mandatory prison sentence. As it stands, this law has a giant hole in it. The rape of an extremely vulnerable adult carries no such protections.

I would like the Utah State Legislation to fill this hole. No other family should ever fall in.

Ashley could not run. Could not tell. Could not fight in any way. She could not even scream. All she could do was seize. The seizures that needed a camera, that told her story, that stopped her rapist.

Please help me in changing this law by writing Utah Legislators and telling them this situation has to be remedied.

Please check to make sure the state you live in offers these protections.

Please make sure federal law recognizes all vulnerable adults.

We are The Mighty.

We can do this. We can pass Ashley’s Law.

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Hey y'all!

I'm new, my name is Labradored. I am here because of multiple medical and mental health issues. My oldest daughter was born with Rett Syndrome (a pervasive developmental disability with serious health issues) and died from a seizure in my arms at 12 years old in 1993. My youngest daughter died in a car accident at 17 in 2000. They were my only children. I was so very blessed to be their momma.
My medical issues include long term insulin dependent diabetes II, exocrine pancreatic insufficiency, Celiac disease, asthma, osteoarthritis, severe food, drug and environmental allergies, dysphasia, Barrett's esophagus, eosinophilic esophagitis, GERD, chronic stomach issues, and IBS.
My mental health concerns include Major depressive disorder, generalized anxiety, OCD and ADHD, and complicated grief related PTSD.
The memes on this site are helping me get through this current gastro flare, I've been nauseous all day today with vomiting and diarrhea for the last 12 hours . This happens about twice per month. My food menu is quite limited due to allergies to gluten, soy, most non citrus fruit, lactose intolerance and tree nut and peanuts. I feel like I develop a new food allergy every year.
My medical issues began shortly after my youngest girl died. Don't let anyone tell you that grief is just an emotional response, grief has wrecked serious havoc on my body.
I have a wonderful husband, supportive and loving friends, a great career as a behavioral health counselor and three fur babies who provide unconditional love and entertainment.
Most of the time I manage pretty well, but when my health conditions flare, it tanks my mental health as well.
Looking forward to sharing and receiving. 🩵🩷 Blessings upon you all.

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The pain of watching your kid and your grandkids suffer. Never knowing if this will be the last day with my grandkids.

#PTSD #RettSyndrome #CCHS

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