Advocating in memory of my son: vascular Ehlers-Danlos Syndrome 2007-2022

I wanted to share some information about

vascular Ehlers-Danlos Syndrome (vEDS) — the silent illness that took my child, and far too many others, long before their time.

My son Denton was only 14 years old. I was so proud of him. I looked forward to the day he would grow into his independence, to the years I thought we still had ahead of us. Life was chaotic, and I was juggling my other children, responsibilities, and everything in between.

"I didn’t realize how quickly time was slipping away."

I wish I could take back every moment I lost, and I wish I could have given him the best version of me. But I can’t. It’s too late now for the time I thought we would have together. And the pain of that is like no other — especially on nights like tonight.

Denton deserved a future filled with unimaginable dreams.

" He deserved to graduate high school, to fall in love, to build a family of his own. But life had other plans — plans I never could have imagined, but plans that were God’s. And no matter how deeply they hurt, those plans meant taking Denton home at just 14 years old."

The illness that took him — vascular Ehlers-Danlos Syndrome — was completely silent and completely undetected until it was too late. Maybe this is how Denton’s legacy continues.

Maybe God’s plan is bigger than what we can see.

" Maybe, through Denton’s story, his smile, and his memory, we can save the lives of others."

I had never heard of vascular Ehlers-Danlos Syndrome before. I still can’t pronounce it right, and maybe that sounds terrible — but it’s honest. What’s also honest is this: the medical community knows far more about vEDS today than most families ever hear about in time.

What the Medical Community Knows About vEDS

"According to the medical literature, vEDS is a rare, autosomal dominant connective tissue disorder caused by mutations in the COL3A1 gene. As the article states:"

> “Patients with vEDS present with severe tissue fragility that can result in arterial aneurysm, dissection, or rupture… especially of medium-caliber vessels.” > (J Clin Med. 2024;13(14):4255)

This fragility also affects hollow organs like the bowel and uterus, and can lead to spontaneous pneumothorax. Many patients show physical signs — translucent skin, visible veins, thin facial features — but some show none at all, which is why so many families, like mine, never see it coming.

"Historically, vEDS has been devastating. The article explains:"

> “The median life expectancy has been estimated to be around 50 years… major complications occur in up to 85% of cases by the age of 43.”

But there is also hope in the medical progress being made.

"What Has Improved — and Why Awareness Matters"

The article highlights that outcomes have improved in the last 20 years because:

- Doctors are more aware of vEDS - Families are getting earlier genetic testing - Specialized centers now exist - Regular vascular imaging is becoming standard - Some medications may reduce vascular events

"One medication, celiprolol, has shown promise:"

> “The BBEST trial demonstrated a 64% reduction in the risk of arterial rupture or dissection in patients treated with celiprolol.”

But the article is honest

"— celiprolol is not a cure, and it’s not even available in the U.S. yet. Research is ongoing, including trials on:"

- Angiotensin receptor blockers (ARBs) like losartan - Drugs targeting collagen breakdown - Medications affecting cellular stress pathways - Future gene therapy approaches

The article makes it clear: vEDS is still dangerous, still unpredictable, and still underdiagnosed.

"But awareness saves lives."

Why Denton’s Story Matters

Maybe this is the part of God’s plan I couldn’t see before. Maybe Denton’s story —

" His smile, His spirit, His short but powerful life "

— is meant to shine a light on a condition most people have never heard of until it’s too late.

If sharing his story helps even one family recognize the signs… If it pushes one doctor to look closer… If it leads one parent to ask for genetic testing…

"Then Denton’s legacy becomes a lifeline."

And that means his story doesn’t end at 14. It continues — through awareness, through advocacy, through love.

Reference

"Buso, G., Corvini, F., Fusco, E. M., Messina, M., Cherubini, F., Laera, N., Paini, A., Salvetti, M., De Ciuceis, C., Ritelli, M., Venturini, M., Chiarelli, N., Colombi, M., & Muiesan, M. L. (2024). Current evidence and future perspectives in the medical management of vascular Ehlers-Danlos syndrome: Focus on vascular prevention. Journal of Clinical Medicine, 13(14), 4255. https://doi.org/10.3390/jcm13144255"

https://denton-legacy-lives.base44.app