BIG Dylan, Bigger Miracles

05/29/2026

I know nothing is by accident. But it feels a little eerie that today is Addison’s Disease Day and it also, just so happens, to mark 6 years to the day that we received the absolute most devastating news. It’s the first time we heard about Addison’s disease or ALD. Six years ago today Dylan was the 4th case of ALD ever diagnosed at DMC Children’s.
And while when we end up in the ER the doctors are always waaaaaay more worried about adrenal insufficiency, it’s the ALD that has robbed us of the future we had planned.

We have made a new normal. A new future. A new path. We are doing our best.

Say a prayer for me friends. Diagnosaversaries are hard days.

05/29/2026

🦋💙 On this Addison’s Disease Day, our initiative is simple but urgent:

💙🦋 IT COULD BE ADDISON’S DISEASE 🦋💙

Two lives were lost in 2024, lives that could have been saved with earlier diagnosis and awareness.

🕊️ Sydney Weston, an 8-year-old girl from Missouri, was on vacation with her family when she suffered an adrenal crisis mid-flight. She passed away on June 13, 2024. Her condition had never been diagnosed. 🦋

🕊️ Taylor Rousseau Grigg, a 25-year-old British TikTok creator, lived with asthma but had undiagnosed adrenal insufficiency. She collapsed and died on October 5, 2024. It was only after her passing that Addison’s disease was discovered. 🦋

These heartbreaking cases reflect a deeper, global problem.

Adrenal insufficiency is rare but not rare enough to ignore.

Thousands, possibly millions, remain undiagnosed.

Their symptoms are often mistaken for:

😴 Fatigue
🤢 Nausea
⚖️ Weight loss
🧴 Darkened skin
🧂 Salt cravings
📉 Low blood pressure
⚠️ Sudden collapse

If left untreated, adrenal insufficiency can lead to adrenal crisis, a life-threatening emergency.

But with the right diagnosis and treatment, it can be managed.

💬 That’s why we’re speaking up.
That’s why we’re urging you to pause, ask, and test.

💙 It could be Addison’s disease.
💉 And cortisol could save a life.

We remember Sydney and Taylor.
We stand with every family still searching for answers.
And we will never stop raising awareness until no more lives are lost. 🦋

💙🦋✨

05/29/2026

Art therapy 💙

05/27/2026

05/27/2026

Great week last week including his brother’s prom pics and a long weekend with lots of games and fun.

05/18/2026

Art therapy last week

05/18/2026

Dylan’s latest creation!

05/11/2026

Ugh. The aftermath of a trip. 👎🏻🫣😵‍💫

05/09/2026

Thank you to every caregiver, family member, and advocate who shared their experiences with us through our changing station survey and social media posts. 💜

The response was powerful. Hundreds of comments and stories highlighted the daily reality many families face: changing loved ones in trunks of cars, on bathroom floors, or avoiding outings entirely because accessible changing spaces do not exist.

Because of your input, DEE-P Connections was able to submit a strong public comment to the U.S. Access Board advocating for safer, more dignified universal changing stations in airports.

This advocacy effort was shaped directly by your lived experiences, and we are so grateful to everyone who trusted us with their stories.

✨ “Dignity, safety, and access are not luxuries — they are basic needs.”

Read the full blog and learn more here: http://bit.ly/4wfahMb