Finding Weston’s Way

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Georgetown, KY
Finding Weston’s Way

Follow Weston’s journey as he battles with NAA-15 Neurodevelopment Syndrome and severe autism.

03/01/2026

Skylar has been sick, Flu B has been making its way to each kid.

I couldn’t find Weston the other night, I was yelling for him for probably 3 minutes. I was freaking out. Went in the kids room at my mom’s and he was asleep with his sissy. Sweetest boy!

02/27/2026

Copied from personal page! Please comment or message if you wish to purchase! Thank you ❤️

Weston is more than a diagnosis. He is laughter, deep cuddles, resilience, and a light that fills every room he walks into. But behind that beautiful light is a journey filled with uncertainty, worry, and questions we are still searching to answer.

As most know, Weston has a rare genetic condition involving the NAA15 gene. Because this condition is so uncommon (66 people documented to have in 2023) there is very little research, limited understanding, and no clear roadmap for what his future may look like. His days are filled with developmental challenges, neurological concerns, and the emotional weight of navigating a path that feels unknown and overwhelming.

The hardest part of rare disease parenting is the uncertainty, loving your child so deeply while wishing you had clearer answers, better guidance, and more understanding of what they are experiencing.

This is why this fundraiser means everything to our family.

We are raising funds to support research through Simon’s Searchlight so Weston’s story can help create knowledge, connection, and hope. Not only for him, but for other children and families walking this same rare journey. Research opens doors to understanding. It helps families feel less alone. And most importantly, it brings us closer to answers.

Every shirt purchased, donation made, and share given is a reminder that Weston is surrounded by love and that his story matters.

Thank you for standing beside our family, for loving Weston, and for helping us continue searching for answers, awareness, and a brighter future for him.

We are simply trying to find Weston’s way. 💙

SHIRT ORDERS:

The amazing Kayla Vinsant has offered to take this on. Ordering will close 3/20.

Pricing (includes donation to research)

Crewneck — $25
Long sleeve — $22
Short sleeve — $20

Adult & youth sizes available.
*youth sand short sleeve is not available - however can do a gray/white instead!

This pricing reflects typical fundraiser ranges, but any additional support, extra donation, or simple share means more than we can express.

Payments can made by the following:

Venmo : btrue1123
Cashapp : bmill1123
PayPal : b.miller77@yahoo.com
Apple Pay : 502-735-9971

02/21/2026

When the preschool talk started, my friend, Julianna had told me about little flyers she made for her son when he started to send home, all about him!

I don’t want Weston to ever feel like he’s not included, just because he’s different. So I made these today after meeting with his teacher and I teared up while doing it. He is so different, and that’s the point. He is resilient, strong (sometimes too strong), smart, loving, and SILLY!

I will do anything in my power to ensure he is included, loved, and treated with the same respect everyone else is.

02/20/2026

We meet with preschool teacher today! Yay!!

02/15/2026

Feeling so grateful for everyone who reached out after Weston’s IEP meeting 💛 Your support and kind words mean so much to me family & I.

I only cried once, so I call that a win. 🤩
This week; we go and meet his preschool teacher and I’m soooo excited ❤️

02/12/2026

Today, we have Weston’s IEP meeting. To say we’re nervous, and intimidated would be an understatement.

Weston, we love you and will ALWAYS keep your best interest at the forefront of all we do.

02/09/2026

Rifton chair sitting for 2 min twice a day has been going so good! Neurodevelopment psychologist recommended this to help all of us, and so far so good. 💙

02/05/2026

Picked Weston up from OT yesterday and was given these.🥹

I’m keeping them forever.

Thank you, Brandi Ray❤️

02/04/2026

Met with Weston’s intensive behavioral team today. Hard conversations, honest reflection, and a whole lot of hope. Progress isn’t always loud, but it’s happening. One step, one plan, one day at a time.

01/26/2026

Sitting in our rifton chair today (for the first time WILLINGLY!) and practicing our blue & red colors!

01/22/2026

Moments like this are why access to AAC matters. It is NOT the end all be all, and it is not intended to be. This is how Weston communicates with US. We still talk to him like he will talk back, and I always will.

Today, Weston used his device to recognize himself, showing awareness, understanding, and communication in his own way. These wins deserve to be seen and celebrated.

So proud of this sweet, determined boy and his voice 💙

01/21/2026

Weston has been seeing Ms. Steph with KEIS (first steps) for about 6 months now.

Shes been a blessing to my family. She’s empowered us, advocated for us, supported us, and made us see the silver lining in every diagnosis & situation. During our initial evaluation she said something that stuck with me. She told me she will focus on Weston’s strengths instead of struggles.

Her knowledge, understanding, and willingness to help families like mine, is truly unmatched. In March, Weston will age out of first steps. But I know he will thrive with the resources and skills she’s given him. Ms. Steph, from the bottom of my heart, thank you. We absolutely adore you and are so very thankful for you.

Address

Georgetown, KY
40324

Website

https://humandiseasegenes.nl/naa15

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