Raise Rett Syndrome Awareness

Holding Fox and my heart.I’ve had my mind on other things, so somehow this escaped me, but today there is an organized push to raise Rett syndrome awareness, through #rettsyndromeawareness

While we do devote the entire month of October to Rett Syndrome Awareness, it is a good idea to start the new year off with a gentle reminder of how Rett syndrome does and can affect many, many families worldwide.

How DOES Rett syndrome affect families?

It steals their child, and steals FROM their child, little by little, a skill at a time. Rett children typically develop normally for up to 6-18 months and then over a short period of time, these children lose the ability to use their hands, their language, the ability to walk, usually develop seizures, GI issues, Respiratory issues, scoliosis/kyphosis, the inability to swallow/swallowing issues, often need a feeding tube.

 This is just the beginning… days soon revolve around Rett syndrome. Doctor appointments, surgeries, hospitalizations, medicine regiments, feeding regiments, screaming episodes… that’s your home life, then there’s the “school life”… IEP’s, fighting IEP’s, fighting to GET services in IEP’s-OT, PT, communication; meeting after meeting. 

If you’re a couple…usually one of you is no longer working, well at least not where there are other people. But, you’ll never work harder than you do at home. You’ll watch for every breath sometimes, you prepare umpteen reports, you make hundreds of phone calls a week, you schedule appointments until you can arrange three or more of  them in a single day. You schedule time with your other children. What you hardly ever get to schedule is time with your partner, and that “me time” is as elusive as it will ever get. If you’re a single parent, you’re basically screwed. 

Your priorities flip upside down. You find yourself dreading things like wheelchairs, feeding tubes, back surgeries, report cards…each one a punch in the gut… and then years later you’ll find yourself excited about “your girl’s new ride”, how much weight she’s gained since the feeding tube, how straight her back is and how she hasn’t had nearly as many pneumonia episodes since. The report cards still suck, though. 

And you will weep, desperate, heartfelt, weary tears every single time a girl or boy goes to that eternal sleep, knowing how desperately their parents wanted them to remain, and knowing your child is never guaranteed to awaken, even if they are perfectly happy and healthy when you put them to bed.This is a parent’s Rett syndrome Awareness every single day. 

But, why should anyone else, those not affected by Rett syndrome, care???Why should they invest in research?? What makes Rett syndrome even remotely more important than the multitude of other rare diseases?? 

Because, it is on track to being the first REVERSIBLE brain disorder and the knowledge and mechanisms used to do that have a direct correlation to curing and/or at the very least lessening the effect of other neurological/brain disorders that affect MILLIONS of people and their families… like Autism, Parkinson’s, Alzheimer’s, Fragile X, TBI to name a few. Real treatments are on the horizon. REAL ONES. Ones that can help  those afflicted by other disorders like breathing abnormalities, apraxia, seizures. 

And why else??? Because Rett syndrome doesn’t care what race you are, what your socio-economic status is, it will take any daughter/son, grand-daughter/grand-son, niece/nephew. It can strike any family without warning. So, please educate yourselves and if you can, donate. You never know whose life you might save, maybe even your own child, or maybe, just maybe your own. 

To see what trailblazing research is being done-go to http://www.clinicaltrials.gov and put Rett syndrome in the search section.

To donate go to http://www.rettsyndrome.org

This entry was posted in boys with Rett syndrome, chan zuckerberg initiative, Communication, cure, Education, Fragile X, fund-raising for rett syndrome, Intrepid 2566, Neuren Pharmaceuticals, Newron, Rett Research, rettsyndrome.org, sarizotan, TBI, Trail to a Texas Trial, Trofinetide Pediatric trial and tagged , , , , , , , , , , , , . Bookmark the permalink.

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