Purple for Rett

Purple for Rett please help us raise awareness for Rett Syndrome by sharing our pinned post below & any of our Ella’s Story reels 💜🦋✨

💜 7 FACTS for 7 DAYS 💜we’re half way to reaching our goal, so share like crazy & help us raise awareness for Rett Syndro...
21/10/2025

💜 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...
13/10/2025

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 ...
13/10/2025

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...
13/10/2025

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.

Day 10 💜Unlike many neurological conditions, Rett syndrome is not degenerative — meaning it doesn’t cause the brain to c...
13/10/2025

Day 10 💜

Unlike many neurological conditions, Rett syndrome is not degenerative — meaning it doesn’t cause the brain to continually lose cells over time.

The main issue is that the MECP2 gene doesn’t properly regulate how brain cells communicate and function. So while the brain itself isn’t breaking down, the messages it sends through the body are disrupted.

Day 9 💜CommunicationOne of the hardest parts of Rett syndrome is that it often takes away the ability to speak words out...
09/10/2025

Day 9 💜

Communication

One of the hardest parts of Rett syndrome is that it often takes away the ability to speak words out loud.

But here’s what’s important to know:
💜 Rett does not take away understanding.
💜 They are highly aware of the world around them.
💜 They think, feel, and understand far more than they can show.

With the right tools — like eye-gaze devices, picture boards, or assisted communication technology — they with Rett can share their thoughts, feelings, and personalities.

They are smart, aware, and deserve to be heard. Their voices may be different, but they are still there.

Day 8 💜Walking and balance can be extremely difficult for children with Rett. Some are able to walk for a time, while ot...
08/10/2025

Day 8 💜

Walking and balance can be extremely difficult for children with Rett. Some are able to walk for a time, while others may lose mobility altogether.

These challenges are caused by how Rett affects the brain’s ability to control movement and coordination. Muscle stiffness, loss of motor planning, and scoliosis can also make walking harder over time.

But with the right support — physiotherapy, mobility aids, and daily care — progress and independence are still possible. Every step forward matters. 💜

Day 7 💜Breathing & EpilepsyRett syndrome doesn’t just affect movement and speech — it also impacts the body in complex w...
08/10/2025

Day 7 💜

Breathing & Epilepsy

Rett syndrome doesn’t just affect movement and speech — it also impacts the body in complex ways.

Many children experience seizures (epilepsy), which can range from mild to severe and often require daily medication.

Breathing can also be affected:
▫️ Periods of rapid breathing
▫️ Holding breath
▫️ Irregular patterns, even during sleep

These challenges can be frightening for families and add extra layers of care.

Rett is more than just one condition — it affects the whole body, and that’s why awareness and research are so important 💜

Day 6 💜A key sign of Rett syndrome is the loss of hand skills — things like holding toys, feeding, or pointing.Instead, ...
06/10/2025

Day 6 💜

A key sign of Rett syndrome is the loss of hand skills — things like holding toys, feeding, or pointing.

Instead, children often develop repetitive movements such as:
▫️ Wringing
▫️ Clapping
▫️ Tapping
▫️ Rubbing

It’s known as one of the hallmark signs of Rett Syndrome

Day 5 💜 The Science (MECP2 Gene)Rett syndrome is caused most often by a change (mutation) in the MECP2 gene, found on th...
05/10/2025

Day 5 💜 The Science (MECP2 Gene)

Rett syndrome is caused most often by a change (mutation) in the MECP2 gene, found on the X chromosome.

This gene is responsible for making a protein that’s essential for normal brain function and development. When the gene doesn’t work as it should, the brain can’t properly regulate many of the signals that control learning, movement, speech, and other vital functions.

Because girls have two X chromosomes, they usually survive with Rett — one working copy of the gene can still provide some function. For boys, who only have one X chromosome, MECP2 mutations are often more severe and sometimes fatal early in life.

Right now, there is no cure, but research into gene therapy, protein replacement, and other treatments is ongoing — bringing real hope for the future.

Every time we raise awareness, share posts, and talk about Rett, we help fuel progress towards that breakthrough. 💜

Day 4 💜 Who does Rett affect?Rett syndrome almost always affects girls.In the first year of life, babies with Rett often...
05/10/2025

Day 4 💜 Who does Rett affect?

Rett syndrome almost always affects girls.
In the first year of life, babies with Rett often meet their milestones and appear to be developing typically. But between 6–18 months, things begin to change — progress slows, and sometimes skills are lost.

It can feel like a sudden shift:
▫️ Words that were spoken may disappear
▫️ Hand skills fade away, replaced by repetitive movements
▫️ Walking and balance become difficult
▫️ Breathing difficulties and seizures may begin

Rett is rare (around 1 in 10,000–15,000 female births worldwide), but for the families it touches, it is life-changing. 💜

That’s why awareness matters — because rare doesn’t mean invisible.

DAY 3 💜Most babies with Rett seem to develop normally for the first 6–18 months.Then subtle signs begin to show:▫️ Loss ...
03/10/2025

DAY 3 💜

Most babies with Rett seem to develop normally for the first 6–18 months.
Then subtle signs begin to show:
▫️ Loss of words they’ve started to use
▫️ Trouble with hand movements
▫️ Repetitive motions like wringing or tapping
▫️ Struggles with balance or walking
▫️ Slowed growth and head size

These changes are often missed at first — but they are key to early diagnosis. Awareness matters.

This October, we share the signs. We wear purple. We fight for every child living with Rett. 💜

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