‘His first two years were spent in and out of hospitals with countless seizures. I was scared every day of losing him.’: Mom raises awareness for son’s rare Sturge-Weber syndrome

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“Last week was Rare Disease Day.

Over 300 million people have rare diseases around the world.

Sturge-Weber syndrome is a progressive syndrome with no cure.

It is said to affect approximately 1 in 50,000 live births.

It is not hereditary and cannot be detected in pregnancy.

There are different types of Sturge-Weber syndrome and varying levels of symptoms.

When Noah was born, the large port-wine stain birthmark on his face was a strong indicator due to its size and placement.

Birthmarks themselves aren’t rare, affecting approximately 3/1000 babies. But only about 6% of those have brain abnormalities.

In addition to the large birthmark, Noah has epilepsy, glaucoma, weakness to one side of the body, and developmental delays.

His first 2 and a half years of life were spent in and out of hospitals with countless seizures, and I had no hope. I was scared every day of losing him.

Fast forward nearly five years, he has not had a seizure since July of 2017.

If the old me could look into the future, I’d say don’t give up. There is always hope.

But we will never be out of the woods. Sturge-Weber syndrome is progressive and seizures may occur at any time.

For now, we take all the wins we can—anti-seizure medication and glaucoma drops are helping to keep seizures at bay and his pressure controlled.

We are amazed by him daily and in awe of his strength, determination, and bravery.

He’s a fighter and a warrior. He deserves to live a beautiful life. We hope a cure will be found in his lifetime.

We hope he can come off seizure meds at some point. We hope and pray he continues to grow, learn, and develop.

Today and every day, I am proud to celebrate Noah and all of the other rare warriors.

Please take some time to educate yourself on rare diseases and continue to teach your children about inclusion and differences.

Together we can make a difference, and together we can help to find a cure.”

5-year-old boy with Sturge-Weber Syndrome laying in the couch laughing with his legs extended in the air
Courtesy of Stephanie Vazquez

This story was submitted to Love What Matters by Stephanie Vazquez of Vancouver, Canada. You can follow her family’s journey on InstagramDo you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more from Stephanie: 

‘The monitor went crazy. Suddenly, there was a half dozen doctors in the room, bagging my son. ‘I’m going to watch him die, aren’t I?’: Boy diagnosed with rare Sturge-Weber Syndrome, ‘A birthmark changed our life’

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‘Are you sure it’s just a birthmark? Is it contagious? That’s gross.’ I was nicknamed ‘Two-Face.’: Man with Port-Wine Stain overcomes harsh bullying, urges ‘it’s helped me change lives’

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