Helping Ezra
Ezra is an overcomer and our Hero! Join us through Ezra’s journey with Gould Syndrome. The name “Ezra” means God-helps. In December 2019 Ezra had his 4th Surgery.
11/12/2025
So Ezra has been learning how to use some Ai programs here at home. He is so excited. We will share more as time goes on. Tonight Ezra started to learn how to use some features of this Ai program. Did I say he is excited?
He started with a picture of himself and then generated a Ai "Minecraft" picture and two videos.
So proud!
04/16/2025
Fb is rude!! 🤣 This page won’t let me share a video with the photos so I’ll pop the video underneath.
We signed Ezra up for Miracle League baseball and he had his first game last Saturday! He loved it!
I found a few pics from when he was little. He loved hitting that ball off the tee-and he was pretty good at it!
Anyone else have their kids in any adaptive sports in the Houston area? We’re excited to see what else might be available.
02/28/2025
In 2019, we received genetic testing results that revealed Ezra and I have a very rare genetic disorder called Gould Syndrome.
It’s one of those things you hear about happening to other people—but never expect in your own life. Even though Ezra has epilepsy and we knew there were challenges, we never imagined a diagnosis like this was waiting for us.
While it was overwhelming at first, having answers has helped both of us understand ourselves in ways we never could before. It has given us clarity about things we’ve struggled with for years and connected us with others who truly understand. Awareness and research are so important, and we’re grateful for the work being done to support families like ours.
To learn more about Gould Syndrome or to donate, visit: https://www.gouldsyndromefoundation.org/donate
Repost (updated) from Feb 2021 (FB made us take down post & pictures)
After failing multiple seizure medications and years of trips to the
ER every two weeks, Ezra underwent the first of 4 brain surgeries beginning in 2014.
Back then we were clueless to the cause of his seizures. Our insurance at that time wouldn’t cover the cost of genetic testing and we honestly didn’t believe that would lead to anything remarkable. (Man were we wrong!)
What we knew at that time was that
1. Ezra had stroke either as an infant or in utero.
2. He had increased muscle tone on the left side of his body (At one point he was given the diagnosis of mild cerebral palsy)
3. His seizures were focalized in the right occipital lobe.
4. His seizures were complex partials and didn’t stop on their own. Diazepam had to be administered rectally every time and an ambulance had to be called to due to the high dosage.
Fast forward to 2019 and Genetic testing was completed and we discovered that Ezra and I both share a very rare genetic mutation COL4a1 (now called Gould Syndrome)
What a journey the last 10 years have been! While there are still unknowns and challenges, we are grateful for Ezra’s year of seizure freedom and relieved to have answers to the some of the whys that we didn’t have before.
This video is from after his surgery in Sept 2014.
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03/20/2024
The day after Ezra had a seizure, Pat took him to the National United States Armed Forces Museum. 🇺🇸
He was feeling great (other than the typical protesting that he does initially upon throwing something new into his routine🤣) Literally zero signs that he had a seizure, minutes after or the day after. He’s been great and I’m amazed and so proud of his maturity through this.
We had a doctor appointment for him today and we’ve got an appointment next week with his Neurologist and then I’m sure he’ll have a hospital stay for some testing within the next month or so. We had to get referrals for 10 other doctors. His p*p looks surprised every time and even more surprised when I hand her the list with the Docors names, address, and phones numbers. I guess she either is shocked at the number of referrals we need or the fact that I have everything organized on the list for her.
So, we are waiting for answers and praying for just a tweak in medications and then we can breathe a deep sigh of relief. That’s the best case scenario and I won’t share the worst. God has Ezra and us, and He knows every cell, every abnormality, every good thing and every bad thing to come. He’s got us every minute and every hour, always. 🙏🏻
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