Today we’d like to introduce you to Elizabeth DeLuca.
Hi Elizabeth, thanks for sharing your story with us. To start, maybe you can tell our readers some of your backstory.
I’m a fifth-generation Texan, third-generation Houstonian, and a proud Aggie. I’m married to my high school sweetheart, and we have four beautiful daughters—Lauren, Allison, Virginia-Claire, and Caroline. Caroline, my youngest, was born with a rare genetic condition that caused her to have multiple life-altering disabilities. She passed away in 2016 when she was just 19 years old.
Before my children were born, I started volunteering as a docent at The Children’s Museum, which sparked my passion for helping children and watching them grow. Over time, I worked my way up to become the President of The Children’s Museum Guild. I was also part of The Junior League Houston and really enjoyed volunteering with other local nonprofits and being part of the community.
Caroline changed the trajectory of my life and what came next for our family in ways I never expected. Between taking her to appointments, staying up late researching symptoms, and keeping up with all of her sisters, I didn’t have a second to spare.
I got involved with Easter Seals because I saw that they care for children with disabilities like Caroline not just when they’re children, but all the way through life. I’m so proud of everything we do here, getting people the therapy they need, communication devices, recreation for adults with disabilities to get out of the house and have community, accessible summer camps, and especially a school for children like Caroline to excel.
Would you say it’s been a smooth road, and if not what are some of the biggest challenges you’ve faced along the way?
When Caroline was born, doctors sent her home without any medical concerns. Just 24 hours later, she began having back-to-back seizures, and we had no idea why. Doctors initially told us it was epilepsy, but as her mom, watching her closely, I knew there was something more going on. I felt an overwhelming need to advocate for my daughter.
I started asking more questions and seeking out additional doctors. Along the way, I picked up on subtle signs and did everything I could to help piece the puzzle together. Eventually, Caroline was diagnosed with STXBP1, a very rare genetic condition. Because it is so uncommon, there was very little readily available information about what she was experiencing or why.
My husband and I established the Caroline DeLuca Endowed Scholarship at Texas Children’s with the hope of one day supporting meaningful research into her diagnosis. This was born out of our deep desire to create something lasting—something that could offer hope, guidance, and answers to other parents walking a similar path. Our hope is that this research will bring comfort to families looking for answers and more light to their diagnosis.
Thanks – so what else should our readers know about The Caroline School at Easter Seals Greater Houston?
Before the Caroline School, I was trying to find a school for Caroline that met all of her complex medical needs AND would offer her a real education. After years of searching, I was never able to find a place that truly met all of Caroline’s needs. I found that I was not alone in this struggle, and there were many other parents whose search also came up empty, so I decided to do something about it.
I opened The Caroline School in 2001 to be a place for children, like Caroline, where they could go for the day and have every single need met, without missing a beat. Each child would have the communication device, therapy, attention, etc. that they need, all in one place.
Looking back 25 years later at Easter Seals Greater Houston, it truly warms my heart as a mom to see the impact The Caroline School has had on the students and their families. Walking into the school, you can feel the joy radiating from the students. I got to chat with a few of my Caroline School friends the other day and ask them what their favorite things about school are. Would you believe me if I told you they said meeting their best friends and MATH?! I say that’s a testament to the amazing teachers we have and their ability to connect with these kids in such a special way.
The Caroline School is one place in this world where children with complex disabilities, most of whom are nonverbal, know they are going to be completely heard and understood—with the communication device they need, teachers who encourage them, and friends who make their smiles brighter every single day.
I wanted a place where all their needs were met so they could come home at the end of the day and simply enjoy quality time with their loved ones.
I am so very proud to be running our second endowment campaign. Our 1st resulted in 1.5 million offsetting tuition for low income families. 7 Years later, we are running our 2nd endowment campaign and are currently over halfway to our goal at 500,000.
Before we go, is there anything else you can share with us?
Throughout this life, I’ve learned how important it is to advocate for those you love. As a mom, you know your child better than anyone, which is why it’s even more important to help them find their voice and support them along the way.
I’ve also learned how building a community can truly change your life. I’ve seen it in my own life and through Caroline. I found that I was able to connect and understand more by talking to parents in the same situation my family was in, and in the ways, we are all able to support and help each other along the way.
I also saw the impact community had on all my girls. Obviously, Caroline through ESGH programs and all of my girls volunteering there.
Contact Info:
- Website: https://thecarolineschool.org
- Instagram: https://www.instagram.com/eastersealshouston/
- Facebook: https://www.facebook.com/EasterSealsGreaterHouston
- LinkedIn: https://linkedin.com/company/easter-seals-greater-houston/
- Youtube: https://youtube.com/user/eastersealshou?themeRefresh=1
