Danny and Mom
b. June 28, 1983 – d.May 5, 2015

July 25, 2022: A Day I'll Never Forget

That summer, on July 25th, I lost my Danny.  The grief hit me hard, and I spiraled into a dark depression.

But here's the thing: I lost sight of something simple. When Danny was born, and later when I met Karen, the idea that I could help kids with Sturge-Weber syndrome gave me a purpose. It pulled me out of my funk and fired me up to make a difference once again. And I couldn't have done it without you all. 

Keeping Danny's Legacy Alive

My biggest fear after Danny passed was that his legacy would fade. So, I decided to attend a conference to see what's happened since the gene discovery. Let me tell you—the research is mind-blowing and exceeds all my expectations!  I wanted to share this amazing news with everyone who supported us.

Why Was Danny So Affected?

I always wondered why Danny seemed more affected by SWS than other kids. As a mom, you naturally blame yourself—what did I do wrong? But here's the kicker: a doctor did a longitudinal study (fancy talk for a long-term study) and found kids with left-brain hemisphere involvement had worse outcomes than those with right-brain hemisphere involvement.

Looking around at the "normal" kids, I noticed they all had right-side Port-Wine Stains (Birthmarks). It finally made sense and lifted a huge weight off my shoulders. Kids like Danny seemed to have normal development until about 6-7 months, then either declined or stayed the same. Meanwhile, those with right-side involvement mostly had controlled seizures and normal intelligence and motor skills.

This discovery took the heavy burden I had been carrying for so much time off my shoulders. I felt so much lighter knowing it wasn't something I did wrong.

Learn more about Danny's life in this video on YouTube.

What’s Ahead?

We have had cancer researchers on our team, and they're bringing groundbreaking discoveries to the table. The same researchers who, in 2013, discovered the GNAQ gene mutation that causes SWS (purely by accident) are ready to apply their breakthroughs to tackle SWS head-on.

But that's not all! Another brilliant doctor has cracked the code on blood markers that can predict seizures, mental challenges, and glaucoma before any symptoms appear. This means we can shift our focus from treatment to proactive prevention, catching these issues right from birth. Our relentless researchers and doctors are working with Zebrafish and mouse models to find new therapies to help SWS patients. While progress has been slow, a dedicated researcher has developed an eye drop that could save children from surgery and the risk of losing their eyesight and another is working on an implant as small as a grain of salt!

There are countless other breakthroughs brewing, too complex to dive into here, but it's all fantastic news. All of these incredible advancements wouldn't be possible without your support. 

The Sturge-Weber Foundation has a Memorial Garden on the website that honors those lost to this rare disease but, we will never forget them as their legacy lives on. Visit the Garden here.

Love, Kathy

Watch Kathy talk about the beginning of Danny's diagnosis on YouTube here.

Watch The SWF's "What If..." video on YouTube here.

Danny's Champions

Danny's family has set up a donation page in The SWF Memorial Garden and is considering giving a gift of hope. Learn more about below.