Purple for Rett

DAY 7 💜

Stage 4 — Late Motor Deterioration

Usually beginning around age 10, Stage 4 can last for years or even decades. While seizures, breathing problems and abnormal hand movements may become less prominent, mobility continues to decline, with muscle weakness, stiffness, scoliosis and, eventually, loss of walking ability.

After losing skills they once had and facing seizures, pain and increasing physical limitations, Stage 4 is a phase many people with Rett Syndrome remain in for the rest of their lives.

It’s a cruel and heartbreaking condition that takes so much from these beautiful souls.

DAY 6 💜

Stage 3 is also know as the Plateau Phase, this is when seizures & worsening of breathing issues begin. Although something’s such as hand usage & walking abilities can slightly improve it also can bring along cardiac arrhythmia in some.

DAY 5 💜

Stage 2, as defined by Mayo Clinic: Rapid deterioration. Starting between 1 and 4 years of age, children lose the ability to perform skills they previously had. This loss can be rapid or more gradual, occurring over weeks or months. Symptoms of Rett syndrome occur, such as slowed head growth, abnormal hand movements, hyperventilating, problems with movement and coordination, and a loss of social interaction and communication.

Rett Syndrome takes away so much, it takes their voice, control over their body, ability to breathe easy & causes so many other serious issues. But there is hope for a cure, this is why we fight SO hard each October to raise awareness for those living with Rett 🦋

Day 4 💜

Rett Syndrome typically has 4 stages. Stage 1 is know as the Early Onset Stage.

Between the ages of 6-18 months concerns begin to grow when milestones aren’t quite being achieved.

You start to notice that they may not be walking or talking yet, or able to feed themselves with a spoon, some repetitive hand movements or hand mouthing. But for a baby of 6 months, this all seems somewhat normal. It’s not until the second stage things start becoming more noticeable.

DAY 3 💜

Today I want to bring up a subject that a lot of families are facing.

I’ve heard more & more of my Rett friends & family struggling with Awareness Month.

While raising awareness for Rett is amazing, educational & a wonderful way to get the word out there. To many families it can be confronting & triggering.

Every day our families have to watch our loved one struggle with Rett. We see the challenges they face & the harsh reality that is Rett Syndrome.

So for some, it’s a hard time of year. It’s a reminder of all the things we fear about Rett, but we also know the world needs to hear about it.

It’s a day to day battle & many of us just take it one day at a time, never knowing what Rett will throw at us next.

you’re not alone in feeling the way you do

DAY 2 💜

Seizures vary from child to child but statistics show that 70-90% of Rett patients experience seizures.

In Ella’s case she experiences absent, gelastic, focal & tonic clonic seizures.

She also has what they call “silent seizures” continues small seizures that occur in the background.

Ella has seizures daily as well as frequent dystonia episodes, afterward she always becomes very lethargic & very tired. It seems to take away all her energy instantly.

💜 7 FACTS for 7 DAYS 💜

we’re half way to reaching our goal, so share like crazy & help us raise awareness for Rett Syndrome! 🦋

Day 13 💜

There’s no cure for Rett syndrome yet, but the right therapies can make a huge difference.

Each therapy helps in its own way:
💜 Physiotherapy strengthens muscles and supports mobility.
💜 Speech and communication therapy helps with eye-gaze devices and other ways to express needs.
💜 Occupational therapy focuses on daily activities and independence.
💜 Music, hydro, and sensory therapies bring calm, joy, and stimulation.

Progress may be slow, but every step — every movement, every smile — matters. These therapies don’t just support the body, they help bring connection and confidence back into daily life. 💜

Day 12 💜

Behind every child with Rett is a family living a life of love, strength, and constant adjustment.

Parents often face endless appointments, sleepless nights, medical emergencies, and emotional ups and downs — all while trying to keep a sense of normal life.

Siblings grow up learning empathy, patience, and what real courage looks like.

Families living with Rett are warriors — they love fiercely, advocate tirelessly, and keep hope alive every single day.

Day 11 💜

Children with Rett syndrome can live well into adulthood with proper care and medical support. But unfortunately that’s not always the case.

Life expectancy varies depending on the severity of symptoms, especially breathing and seizure control — but thanks to better understanding, therapies, and research, many women with Rett are now living into their 40s, 50s, and beyond.

Each generation is seeing progress. There’s more hope now than ever before — with studies into gene therapy, protein replacement, and targeted medications showing promising results.

Every share, every donation, and every voice helps bring us one step closer to a future where Rett no longer steals potential.