Stories of Perseverance: Desarae Wright
Today's we're sharing the story of Desi and Brayden Wright and their experience with Brayden's diagnosis of Hypertrophic Cardiomyopathy. We're also excited to share that half of all proceeds from orders placed on August 2nd will be donated to the Wright family to help them in their journey! Click here to shop!
Briefly describe your experience with Brayden's diagnosis, prognosis, and any details you feel comfortable sharing.
In 2018, Brayden was diagnosed with Hypertrophic Cardiomyopathy after having a couple instances of passing out unexpectedly. HCM causes the heart muscle to thicken, making it so the heart doesn’t pump blood correctly. The following year, when his youngest child, Baylor, was only 3 weeks old, the doctors performed surgery to place an ICD (implantable cardioverter defibrillator) that is meant to shock his heart if it ever suddenly stops. We thought that would be the extent of his issues until he started having more symptoms in the Fall of 2020. He put on 20 pounds in less than a month, which we’d come to find out was water retention due to his heart going into diastolic heart failure. In March of 2021, he was hospitalized to give him diuretics through IV.
After the hospitalization, Brayden was referred to a team of heart transplant doctors that specialize in HCM. It was recommended that he start the work up to get approved to be on the heart transplant list as there are a lot of hoops to jump through and can take time. While working on getting everything in order, Brayden’s condition continued to worsen, which is expected since it is a progressive condition. After performing a right heart catheterization on July 8th, it was determined that Brayden needed to be admitted to the ICU to monitor and regulate symptoms until he is able to receive a heart transplant.
Who or what helped/or is helping keep you grounded during this challenging time?
So many people! Mainly my family, friends and neighbors. Everyone who has jumped in to help with child care, meals, lawn care, and financial need has made a bigger difference than I think they’ll ever realize. There’s something so humbling and grounding about accepting help during a time when you truly can’t pay it back.
How did you balance the needs of Brayden, your kids, or yourself while still allowing room for your grieving and coping?
I’ve had to learn to find moments to practice self care for myself. This means the fun, pampering self care like splurging on a manicure but it also means the not-so-fun self care like making sure I stay on top of my household duties. When I can stay in a routine and try to keep some normalcy for my kids, it’s helped. I’ve also had to give myself grace and keep realistic expectations. Priorities had to shift and I had to realize that it’s ok.
What advice would you give to parents in a similar situation (or really any parent who is dealing with uncertain challenges or loss).
Ask for and accept help! Let people know exactly what would be the most helpful even when it feels uncomfortable. Find others who might have experienced something similar so you can have someone to talk to and relate to.
What has this experience taught you about resilience?
We are stronger than we realize. Even if you have to take things day by day, that’s better than giving up. There is good in every situation and working on intentionally appreciating the good can help alleviate some of the heaviness.
Update on Brayden and how we can help:
Brayden is still in the Coronary ICU. His numbers are fairly stable. He was approved to go outside so he can now see the kids about once a week. Follow along with our story and ways to help @heartsbeatforbrayden.