Jessie's Gear

09/24/2025

Autism doesn’t need fixing — it needs understanding.
The strongest medicine is love, acceptance, and support. 💙🌈

09/23/2025

Unless you’re living it, people truly have no idea how isolating life as a Rett parent can be.

Sometimes I’ll see friend groups gathering with their kids—running, laughing, carefree—and I feel that ache in my chest. Not just because we’re missing out, but because Alex is missing out. And it cuts deep. 🥺

The truth is, most families like ours don’t have a village. Plans get canceled because seizures strike, outings end early because of sensory overload or exhaustion, and every moment requires anticipating needs most can’t even imagine. Feeding tubes, medications, bathroom dignity, keeping her body cool to prevent a seizure—none of it pauses just because we want a “normal” day out. And slowly, people step back. It becomes “too much.”

And then comes the part that hurts the most: watching other kids on the playground. They play together, but not with her. They whisper instead of inviting. They laugh instead of learning her name. 💔

That’s the reality of Rett Syndrome—it doesn’t just steal abilities, it too often steals belonging.

So if you have a village—even one friend who shows up and stays—please don’t take it for granted. Some of us are walking this road in a loneliness so heavy it hurts.

To those who do lean in instead of walking away: thank you. You’re part of the reason our kids can still shine in a world that too often looks past them. 💜

09/11/2025

Just my two cents.....

Caregivers deserve more than survival mode.

You may not agree, but you also probably have never experienced this life.

Be thankful you have no idea what survival mode is.

•
•
•

A Journey For Avery

09/02/2025

Still time to get your tickets to support this amazing organization.

08/30/2025

Well this is interesting

Free shipping across Canada. Transparent pricing.

08/30/2025

💜

08/23/2025

Conditions that may cause symptoms similar to epilepsy include:
Syncope . Syncope (fainting), a brief lapse of consciousness in which blood flow to the brain is temporarily reduced, can mimic epilepsy. It is often misdiagnosed as a seizure. Patients with syncope do not have the rhythmic contracting and then relaxing of the body's muscles.
Migraines . Migraine headaches, particularly migraine with auras, may sometimes be confused with seizures. With epileptic seizure, the preceding aura is often seen as multiple, brightly colored, circular spots, while migraine sufferers tend to see black, white, or colorless lined or zigzag flickering patterns. Typically the migraine pain expands gradually over minutes to encompass one side of the head.
Panic Attacks . In some patients, partial seizures may resemble a panic disorder. Symptoms of panic disorder include palpitations, sweating, trembling, sensation of breathlessness, chest pain, feeling of choking, nausea, faintness, chills or flushes, fear of losing control, and fear of dying.
Narcoleps y. Narcolepsy, a sleep disorder that causes a sudden loss of muscle tone and excessive daytime sleepiness, can be confused with epilepsy.- NIH - Cont. to link: https://nortonhealthcare.com/news/is-it-syncope-or-a-seizure-both-can-cause-loss-of-consciousness/

https://www.researchgate.net/figure/Similarities-differences-and-borderlands-of-migraine-and-epilepsy_tbl1_351603620

08/14/2025

Epilepsy isn’t just about seizures. It’s a condition with many layers, and often, the biggest challenges are the ones you can’t see.

We want to share the hidden costs that so many in our community face every day.