I’m Becky. I am an ICU nurse, avid crocheter, and a wife to my incredibly amazing husband, Feissal. Fise is a software engineer who loves gaming and anything basketball related (GO CELTICS). Ariele is 10 years old and is obsessed with drama, Broadway, swim team and playing with her bearded dragon, Happy Pancake. Elina is 8 and is a dinosaur aficionado who is always singing and dancing with a giant smile on her face.
Two years ago we got the news from a geneticist that Ariele was diagnosed with Loeys-Dietz syndrome, Type 4. We were in shock. My brain, being an ICU nurse, immediately went into panic mode thinking about worst-case scenarios. We were numb as our lives suddenly went from having 2 healthy children to having to coordinate a ton of appointments.
As hard as it was to hear and process, it finally gave us answers to everything that she had going on from a young age. It was like a great “ah ha” moment. It explained the weight-gain issues, scoliosis, joint dislocations, hernias and how she easily tires when walking long distances.
I reached out to the Marfan [Foundation] support group and I had so many people respond to me and were willing to call me, including Meredith [from the staff team]. It felt so good to have so many people reach out who not only cared but understood what we were feeling.
Last year we finally made it to our first Walk for Victory. Ariele excitedly counted down the days to finally meet someone like her. On the day of the walk the weather was honestly pretty terrible. It was raining and cold but nothing was going to stop us from going. When we arrived we were greeted by so many friendly faces. One friendly face, who also has LDS, showed up just for us.
For the first time ever we were surrounded by people who understood us. The walk was honestly so much fun that we really didn’t notice the weather. We had the walk, food, dancing, an awards ceremony, face painting, balloon animals and some great conversation. We even got to tie dye with some of the LDS/Marfan doctors from the area. At the end of the day we felt like we had added a whole new branch to our family.
If you yourself, family or friend is affected by LDS we would love to meet you. If you’re available on June 2nd for the Boston Walk for Victory, feel free to join our team or create your own.
[There are so many ways to get involved with the Foundation, check out the calendar]. They have everything from summer camps, monthly virtual support groups, galas, conferences, teen game nights, symposiums, and a nurse you can email questions to who specializes in genetic vascular and aortic conditions (loeysdietz.org/ask). It even has a packet that you can print out for school. There is so much valuable information available so check it out if you haven’t.
We would love to meet you [at the Boston Walk for Victory] and welcome you into the LDS family that we have come to love.
-Becky, Fise, Ariele and Elina
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.