BOATRIGHT FAMILY

This Spotlight appeared in our February 2024 newsletter.

Please introduce yourselves and describe your connection to VWD Connect.

Hello, we are the Boatrights: Jamie, Jerrod and our 22-month-old daughter Ryan. We found the Foundation after Ryan was diagnosed with Type 3, shortly after birth. Conveniently, our hematologist is on the Medical and Scientific Advisory Board for the Foundation and quickly put us in contact with Jeanette.

What are your favorite and least favorite parts about where you live? What would you show a first-time visitor?

We live in Arvada, Colorado, a suburb just outside Denver. Some of our favorite things about living in Colorado are the sunshine, the mountains, and the outdoorsy culture here. One of our least favorite things is fighting traffic to get into the mountains to do outdoorsy things on the weekends. When friends and family visit, we enjoy taking them to Rocky Mountain National Park, going to Red Rocks for a concert, or spending a day exploring a unique little town.

What do you both do for work? For fun? What are some of Ryan’s favorite things?

Jerrod is a manager of a finance team at Lockheed Martin. Jamie was a special education teacher but is currently taking a break to be a full-time mom. For fun, we enjoy camping, playing ice hockey, traveling, and exploring new restaurants and breweries.  Ryan’s current favorites are: “spicy!?” (trying spicy foods), “Ryka bone!” (giving the dog a treat), “Help ‘itchen??” (helping cook meals), “wimming!” (swim lessons), and her stuffed bunny, “Bunny.”

What advice would you give to new parents of a child with severe VWD?

Well, we aren’t very far along on this journey but if we had one piece of advice to give, it would be to find your people. Not everyone in your circle is going to get it and that’s okay. Let’s be honest, most people are not going to get it and not everyone is going to be helpful or supportive. It’s tempting to put up walls and weather the storms on your own but that path is simply not sustainable. Find the experienced person you can call/text when you have a question at 10pm on a Sunday. Find the supportive person that celebrates your victories with you and empathizes with your battles (and cries with you over a bottle glass of wine). Find the local person you can rely on to show up when you really need it. Keep this person informed – take them to appointments and have them trained on how to infuse so you have another person in your corner in an emergency situation. Find your people – the special, select few – and let them in.

Do you have favorite Conference or Workshop memories to share?

We remember how it felt to attend our first conference this past July. We had an overwhelming feeling of gratitude, knowing that we weren’t alone and that this amazing resource exists for us. Oh and a certain special little girl’s karaoke performance of a Hamilton song with her dad was pretty great too.

What has been the best part of being a member of VWD Connect?

Trivia. Just kidding... but we’ve enjoyed it! The best part for us has been the friendships we’ve made and continued throughout the year!