Autumn's Journey & Rett Syndrome Awareness

11/01/2025

Thank you all!! Im sorry I slacked posting this month..as ive mentioned life has been rough lately!
I appreciate all the love, shares, comments, prayers and purchases! I refuse to stop fighting for our girl!!

10/31/2025

10/29/2025

Being a special needs parent is …

Eating too much because you feel like it’s the only thing you have to look forward to.

Not eating enough because of the guilt you feel that your child can’t enjoy the same flavorful foods as you.

Not being able to just make a quick trip to the grocery store.

Giving up some dreams because now all you care about is being your child’s best advocate.

Spending way more time at home.

Letting go, and letting God.

Planning your next nap the moment your eyes open in the morning.

Spending thousands of dollars on things that “might” help.

Forcing a smile when your insides feel numb.

Being kind to everyone because you know the true meaning of a heartache.

Giving so much love to your dependent child that you feel like you are neglecting your independent child.

Feeling guilty a lot.

Being fascinated by a babies fine motor skills.

Loving fiercely.

Learning how to have a louder voice to make up for the one your child’s lost.

Never sitting down alone, or just never sitting down.

Feeling a sting in your heart when you see a toddler walking next to their momma at the store.

Being strong.

Being weak.

Avoiding spending money on family pictures because it will never be the ideal portrait.

Realizing who really cares about you and who doesn’t.

Displaying God’s Grace.

Feeling that no one truly understands.

A new found passion for inclusion and acceptance.

Making decisions, lots and lots of decisions.

Constantly getting new diagnoses, not only for your child, but also that new anxiety and depression diagnosis on your personal medical summary.

Sitting in the driveway wiping your tears so you can stamp on that smile for the ones who need you.

Asking God why for the thousandth time.

Saying I love you a million times even though you know it won’t be reciprocated.

Kissing them on the nose 1000 times a day because it’s the closest feeling to them kissing you back.

Being needed every second of everyday of every week of every month for the rest of your life.

Finding joy in the itsy, bitsy, teeny, tiny, little things.

10/29/2025

Autumn did some Halloween crafting yesterday with her best friend (her cna miss pam!)

10/25/2025

24...not only imagine it being you, but imagine it being your child!

Why we keep talking about Rett...

I recognize that without living through the myriad of symptoms that Rett causes, it’s hard to really picture what these symptoms are like. Not being able to use your hands, for example, does not seem as horribly disabling as it is. Not being able to talk sounds frustrating, but not impossible to deal with. Not being able to breathe sounds like an asthma attack that most people are familiar with. But that’s not what Rett Syndrome is. So, let me try to put it in the realest terms I can.

Breathing. Imagine waking up in the morning because you can’t breathe. You’re gasping for air. That air does not come. It frustrates you, so you start breathing rapidly, hoping to get enough air into your lungs. It doesn’t come. It makes it worse. Your body panics, breathing faster and faster until it starts to shut down. Your lips turn blue. The more you think about breathing, the harder it is. You close your eyes, barely enough oxygen in your system to keep them open. Everything goes black for a second, before your body reacts, gasping for air, returning you to the beginning of the cycle. Imagine if this happened to you every 10-20 minutes all day, every day.

Hand Use. Imagine seeing your favorite food in front of you, wanting it, starving, but your hands won’t move towards it. They move away from it. The more you concentrate, the harder it is. Your fists have been clenching constantly, breaking the skin on your palms, blistering your knuckles for weeks and months and years. You can focus long enough to hold a fork to take it to your mouth, nervous you won’t make it into your mouth and your sustenance will fall to the ground. Imagine trying to drive a car without control of your hands or arms, pick up a book, play with a toy, wave hello. Imagine if this was your day, all day, every day. It would feel like a bad episode of the Twilight Zone, stuck in a body, that simply won’t respond.

Balance. Imagine standing up and immediately fearing you were going to fall. You take a step. You could walk fine yesterday. You could walk fine an hour ago, but at this instant, your legs don’t move. Your knees start to buckle. You double over in hopes of finding some sense of balance, but it doesn’t help. You throw your arms out, but it doesn’t help. You hope someone is nearby to help you stand, or something soft for you to fall in, but you have no control of either of those things. You can’t call out for help.

Communication. You can’t call out for help. You can’t say you’re hungry, you’re thirsty, you’re hot, you’re cold, you’re sick, you’re hurt. You can muster up screams if you’re highly motivated, but that doesn’t mean it’s clear what you’re screaming about. You just hope the person you’re near can guess how they can help you. You can’t point, or gesture, only stare, hopefully, desperately, tragically.

Seizures. Imagine through all of these terribly disabling symptoms, every now and again, the world will stop as electricity courses through your brain, freezing everything. You stare into space, the tools you use to keep limited control of your body, suddenly completely shut down and your body goes limp.

Rett Syndrome is amongst the most debilitating diseases today. With your help, it won’t be tomorrow.

10/23/2025

And this is why we do fundraising every year! No amount is 2 low and no purchase is never not enough! Even the ones that cant purchase but share to push it out is a HUGE step!!

10/22/2025

October is Rett Syndrome Awareness Month. 💜

Though first identified in the 1960s, Rett syndrome did not receive worldwide recognition as a distinct disorder until 1983. Through the 1980s and 1990s, diagnostic criteria were developed and research continued, culminating in the landmark discovery of the MECP2 gene mutation as the primary cause of Rett by Dr. Huda Zoghbi’s lab in 1999.

In 2006, the Natural History Study began collecting vital data on the progression of Rett syndrome—data that continues to guide care standards and inform today’s gene therapy clinical trials. And in 2023, after decades of relentless research and advocacy, the FDA approved the first-ever treatment for Rett syndrome, marking a historic milestone for the entire community.

Each discovery, study, and breakthrough over the past 40 years has brought us closer to better treatments and, one day, a cure. 💜 But we're not done yet. This October, we need your help to raise awareness and critical funds in our fight against Rett. Learn more and get started today at rettsyndrome.org/october.

Together we can let the world know about Rett syndrome and the challenges it presents to families. Rett awareness raises funds, impacts legislation, and secures resources for those living with Rett.

10/21/2025

October is Rett syndrome Awareness Month. This means of course to make OTHER people aware of Rett syndrome; for us parents, siblings, grandparents, caregivers the whole YEAR is awareness month.

So, how to make people aware? There are so many ways and we each find our own, simple but effective ways.
I am going to use this post to list the ways we, who love these children and adults, have to be aware. Every. Single. Day.

If our child isn’t awake on time…no matter how old they are…we check to see if they are breathing. We NEVER assume they are just sleeping in.

We watch their eyes. What are they looking at? What do they want? It’s exhausting to be responsible for noticing a flicker and then feel like the worst parent ever, if you miss it.
Are they in pain? Then we have to search for it, like detectives. We have a mental list we go through, head to toe. If we can’t figure it out, we go to the ER. Imagine having broken your arm or leg and not a soul in the world can guess because you can’t speak. Then we are very aware of the GUILT of having missed it.

We have to figure out what is making them upset. This could be ANYTHING-as simple as a favorite toy not being where it’s supposed to be, not having their favorite program on, or even something that happened at school and you have no idea occurred.

We have to keep track of feeding habits. Do they scream after eating? Could be reflux or gall stones. Are they losing weight? Do they need a feeding tube? Can they swallow? They coughed….did they aspirate? Will they get pneumonia, now?

We have to know they need a yearly EKG.

We have to know they need scoliosis checks/kyphosis checks.

We have to think about if/when we should do surgery.

We are aware of who’s in the hospital, we watch their parents chronicle the hospitalization, we see when it goes south, we are there in spirit when parents have to make decisions we never want to make, but are always in the back of our minds.

We have to be aware of what is going on in schools, day programs, how can we make the experience better, how can we educate children who can’t speak?

We are aware EVERY. SINGLE. DAY. that most likely we have somehow failed our children that day by missing a glance, a tear, a sigh, a sound, an effort.

That is how I view Rett syndrome Awareness. Our children need a treatment, a cure. Because the most important thing we are aware of….
Time is not on our side.

10/21/2025