Blooming Butterfly-Macaylas journey

Blooming Butterfly-Macaylas journey This is Macaylas page that we update for family/ friends on her journey. Macayla's journey from the unknown to diagnosis has been rough.

diagnosed with :
Bilateral club feet 2013 Spd 2014 Cohen syndrome 2015 Rod cone dystrophy 2015 Bilateral Hip dysplasia 2015 Chronic severe Neutropenia 2019 Dysautonomia 2019 Macaylas birth resulted in damage to her left arm (erbs palsy) . Macayla was born with severe bilateral club feet which have required surgeries to create a heel and length the tendons. In July 2015 neurology was able to provide an actual diagnosis. We went from a big list of symptoms ( failure to thrive, vision issues, development delays, auditory and sensory processing) to Cohen Syndrome. Both her dad and I are carriers of cohens with one of us carrying a partial gene deletion and gene mutation. There is a 25% chance as carriers each pregnancy results in a child with cohens.We only have Macayla together. Macayla also has neutropenia (low white blood cells) which causes her ability to fight things off to be slower. Macayla also has Retinitis pigmentosa (she will go blind ) inherited diseases causing retinal degeneration. http://ghr.nlm.nih.gov/condition/cohen-syndrome

Macayla has a great support system that include family, friends, siblings, godparents,therapist, specialty doctors and so many others. This is page is a general place for information to be shared and for those wanting to follow Macaylas Journey. I know that each day she is becoming a more beautiful butterfly everyday. As butterflies change in their cocoon and emerge as beautiful bugs. Every child is a butterfly , some just take longer to bloom .

04/11/2026

Miss amazing Arizona

Macayla's first miss amazing
04/11/2026

Macayla's first miss amazing

When your stuffed friend comes alive , the best day.Thank you HalloweenCostumes.com for such a neat costume . ...
04/08/2026

When your stuffed friend comes alive , the best day.
Thank you HalloweenCostumes.com for such a neat costume .

💙🦓 Rare Disease Day – Show Your Stripes 🦓💙 Today we honor our rare girl — Macayla.Macayla has Cohen syndrome, a congenit...
02/28/2026

💙🦓 Rare Disease Day – Show Your Stripes 🦓💙

Today we honor our rare girl — Macayla.
Macayla has Cohen syndrome, a congenital (present at birth) genetic condition first described in 1973 by Dr. M.M. Cohen Jr. Fewer than 1,000 individuals worldwide have been diagnosed.
Dad and I are both carriers — Dad has a deletion and I have a mutation — and together that resulted in Cohen syndrome being inherited in an autosomal recessive pattern.
Cohen syndrome can include: • Hypotonia (low muscle tone)
• Intellectual disability
• Distinctive facial features
• Retinal dystrophy (progressive vision loss)
• Progressive high myopia
• Differences in hands and feet
• Obesity risk
• Developmental delays
It is often linked to mutations in the VPS13B (COH1) gene. There is no cure — treatment focuses on supporting symptoms and helping individuals thrive in the ways that are uniquely theirs.
Macayla also has chronic congenital neutropenia, meaning her body does not produce enough white blood cells to fight infection. Her strength includes not only perseverance but weekly injections, constant monitoring, and more bravery than most adults will ever know.
But here’s what a diagnosis doesn’t capture:
Her joy.
Her resilience.
Her humor.
Her sparkle.
Her ability to teach us what really matters.
She may be rare — but her impact is mighty. 💙
Today we wear stripes for the zebras.
We advocate.
We educate.
We celebrate.
In honor of Rare Disease Day, this is our rare daughter — Macayla. And we are so proud to be her parents.
🦓💙

When your TV show friends come in live , it becomes the best dayWild Kratts live , Macayla was excited to watch the show...
02/23/2026

When your TV show friends come in live , it becomes the best day
Wild Kratts live , Macayla was excited to watch the show and met the Kratts brothers she also loved the villain was Zach ( her favorite character )

Macayla got new afos Wednesday. They had some issues with the design but she didn't seem to care.
02/15/2026

Macayla got new afos Wednesday. They had some issues with the design but she didn't seem to care.

Macayla saw Ortho on Wednesday, everything looks good no hardware malfunction. She is 2.5 months post surgery and hopefu...
02/05/2026

Macayla saw Ortho on Wednesday, everything looks good no hardware malfunction. She is 2.5 months post surgery and hopefully with the new afos coming she can weight bare more

💚 Ways to support Macayla’s all‑inclusive Girl Scout troop this year 💚 💚 About Macayla’s All-Inclusive Troop 💚Macayla’s ...
02/02/2026

💚 Ways to support Macayla’s all‑inclusive Girl Scout troop this year 💚

💚 About Macayla’s All-Inclusive Troop 💚
Macayla’s Girl Scout troop is proudly all-inclusive, meaning girls of all abilities, backgrounds, and learning styles are welcome and supported.
Our troop includes girls with disabilities, neurodivergent girls, and girls who may need extra time, accommodations, or alternative ways to participate—and that’s not just accepted here, it’s celebrated ✨
We focus on:
💕 Belonging and friendship
🎯 Meeting each girl where she is
🧠 Different ways to learn, communicate, and lead
🌈 Building confidence, independence, and joy
Every girl participates in a way that works best for her—whether that’s being front-and-center talking to customers, helping behind the scenes, or contributing in quieter ways.
When you support Macayla’s troop, you’re not just buying cookies 🍪
You’re supporting access, inclusion, and opportunities for every girl to succeed 💙

One delicious box at a time! 🍪😄
You can support Macayla’s troop by purchasing any of these favorite Girl Scout Cookies—yes, every single one:
Thin Mints
Trefoils
Tagalongs
Do‑si‑dos
Samoas
Lemon‑Ups
Adventurefuls
GF Toffee‑tastic
NEW in 2026: Exploremores — a rocky‑road‑inspired sandwich cookie with chocolate, marshmallow, and toasted‑almond crème.

Local Arizona family/friends we will deliver
Out of state or more than 2 hours drive you can easily select shipped

✨ Want to make an even bigger impact?
We’re aiming to donate 100 boxes of cookies to our local first responders as a thank‑you for all they do in our community 💙🚓🚒

📣 COOKIE COUNT CHECK!
First responders donation goal: 100 boxes
Current total: 13 👀
We are 13% of the way to making first responders VERY happy and 87% away from greatness 😆🍪

Help Macayla’s troop close the cookie gap 👉
https://digitalcookie.girlscouts.org/scout/macayla644971

💡 Important note:
Please do not select the donation option at checkout—those go to nationally chosen organizations.
Instead, purchase the cookies in any flavor, then message me or comment to let me know you’d like your boxes donated locally.
Every donated box = one very happy hero 💙
Thank you for supporting an inclusive troop and a great cause! 🙌🍪


Macayla loved seeing today
02/01/2026

Macayla loved seeing today

It is day . Macayla was unsure of the cast saw and did everything possible to keep her foot out of the Drs hands . X-r...
01/09/2026

It is day . Macayla was unsure of the cast saw and did everything possible to keep her foot out of the Drs hands . X-rays look good. The goal is for the screw to remain at least 5 more weeks , however if after the 5 weeks it causes an issue they can remove it. They were debating on another cast but were going to make a walking cast. It was agreed for a walking boot instead . Now it's soaking in the bath and working on desensitizing her foot

STUPID the word heard on Macayla’s aac device tonight at bedtime .She indicated pillow blue as she was seeking a particu...
01/08/2026

STUPID the word heard on Macayla’s aac device tonight at bedtime .
She indicated pillow blue as she was seeking a particular item to go in her bed . Daddy asked if she wanted the multi character SpongeBob pillow, no. Did she want just her SpongeBob pillow, no. Daddy then clarified did she want her SpongeBob pillow case , yes. Daddy proceeded to ask me from the other room if I knew where it was . While Daddy was looking Macayla indicated stupid on her aac device .
This is exactly why “assume competency” isn’t just a philosophy, it’s a lived truth.
There’s something both beautiful and hilarious about a child who is working that hard to communicate…and then uses all that effort to call her dad stupid with pride. 😂
The planning alone deserves recognition. That wasn’t an accident, a random button mash, or echolalia.

That was intent, timing, and a very clear message.
What makes this story so powerful (and honestly validating) is the work behind it.
She didn’t just stumble into that word.
She:
Knew what she wanted to say
Knew where to find it
Navigated multiple layers
Selected a word she’s never shown modeled
And used it in a socially perfect moment

That’s not a lack of understanding — that’s language competence with personality or sass in this household.

And the fact that she immediately owned it when I asked if she called Daddy stupid ? Chef’s kiss. No confusion. No guessing. Just: “Yes. I said it.”
Of course she had to apologize — accountability matters — but the bigger lesson is the one to keep fighting for:
kids like Macayla aren’t incapable — they’re often just trapped in bodies that don’t cooperate.
People who say “they don’t understand” are usually confusing:
motor planning with cognition
speech with language
compliance with intelligence

Meanwhile, Macayla is probably over there spelling out insults through a multi-step AAC maze at bedtime like, “Actually, I do understand — and I have opinions.”
This is why access matters.
This is why AAC stays available all the time.
This is why we assume competency until proven otherwise (and honestly, even then).
Also… the fact that her first secretly-discovered power word was stupid instead of something like a cookie is just peak teenager energy. 🤣
She’s doing amazing.
And Daddy learned two important lessons tonight:
Never underestimate AAC
Kids will absolutely use language for sass if given the chance
And honestly?
That’s communication success. 💬✨

12/29/2025

Silly is her favorite word and she loves to laugh when she hears someone ask about silly.
This was at speech today

Address

12601 E US Highway 60
Gold Canyon, AZ
85118

Website

Alerts

Be the first to know and let us send you an email when Blooming Butterfly-Macaylas journey posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Blooming Butterfly-Macaylas journey:

Shortcuts

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram