PEREZ FAMILY

This Spotlight appeared in our November 2024 newsletter.

How did you get involved with the Foundation?

We are the Perezes: Osval, Natalia, Isabella and Alexandra… and our lovely dog Coconut. We learned about the foundation through another member who gave us the contact information for Jeanette. Jeanette was extremely helpful and had so much information that we knew we had to join.

Where do you live? Where would you take a first-time visitor?

We live right outside of Houston, Texas in a city called Katy. We have been here for about eight years, but we are originally from Colombia (Natalia) and Miami (Osval). Houston’s Museum District is a vibrant area with a diverse range of museums. The Houston Museum of Natural Science is particularly popular, featuring fascinating exhibits on everything from dinosaurs to space exploration. The Children’s Museum is also a hit, with interactive exhibits that engage kids and spark their curiosity.

How is Alexandra doing? What are some of her favorite things right now?

Alexandra was diagnosed at four months, and it was the scariest of times trying to understand what everything meant and how our lives would be impacted. We have learned that although she has limitations, she leads a mostly normal life – with hospital visits sprinkled in here and there! Alexandra is currently in Pre-Kinder in a bilingual program and she is thriving, she loves to learn and play. Alexandra has a few interests right now, she and her sister will be performing for an International Festival representing Colombia, so she is enjoying learning the dances. She also enjoys picking out the prettiest dresses, makeup and shoes! Alexandra and Isabella are very close, they love playing family or restaurant and making messes out of organized rooms – lol!

What would you like to share about your experience at your first in-person conference?

We learned of Alexandra’s diagnosis in 2020 and that’s when we joined VWD Connect. We attended the first virtual conference that year and the following year, but nothing could have prepared us for what it felt like to be surrounded by people living the same reality as you! We had a pretty big party with us, it was my parents (Natalia) and the four of us. I will always remember the kindness extended to us by the moms at the Parent Group that first day (I am crying now thinking about it). It was something I didn’t know I needed – to meet and speak to other parents going through it ALL the time. At home we try not to dwell on it and when we have had big things happen, I stay strong for her, but the parent portion of the conference was big for me! Thank you to all of you who saw in us, what you all have been through before and approached us and gave us the comfort we didn’t know we needed.

What hopes do you have for Alexandra as she grows up with VWD?

We hope she continues to thrive and that she doesn’t see VWD as a limiting factor for anything. We hope that she grows up understanding that she is different, but that she can do mostly anything she wants. We hope and pray that there is a less invasive way for treatment in the very near future – we know puberty is imminent. We hope she grows up to challenge the status quo and that she doesn’t settle for anything less that she deserves. I really hope she learns to use her own voice so she can advocate for herself and that we, as her parents, be her voice and loudest advocates always!