My son, Tyden Maze, was born on July 14, 2022, and was soon diagnosed with Junctional Epidermolysis Bullosa (JEB). Until then, I had never heard of EB, but I quickly became part of the debra community.
As my firstborn, Tyden's journey was an emotional roller coaster. His life was tragically cut short due to complications from JEB, and he passed away on September 30, 2022. My wife and I will always remember him for the incredible strength he showed during his brief time with us.
Initially, I focused on wound care and the constant effort to ensure Tyden's delicate body was properly protected. However, these tasks became less daunting as we turned dressing changes into a fun activity by playing oldies and reflecting on things we were grateful for. The true challenge, in my opinion, was the lack of awareness within the medical field. My wife and I often found ourselves educating hospital staff and employees about the proper use of adhesives, friction, and general information about the condition. This lack of knowledge was no fault of their own but highlighted the rarity of EB as the most challenging aspect. This is why the debra community is so vital.
As a caregiver, your life is forever changed, and it almost becomes a full-time job. Every individual's response to EB will be unique, and different methods of care will be effective. To new caregivers, I hope you remain patient and understand that you are not alone. More importantly, I wish people knew that beneath the wraps and bandages, these are beautiful and strong human beings dealing with something extremely rare. I cannot speak to their experience, but I am in awe of their strength.
One aspect of our experience that saddened me was not being able to hold and share skin-to-skin moments with my son as much as I had hoped. These precious moments, often taken for granted, become even more cherished—and elusive—when navigating the challenges of EB.
The very existence of debra was a sigh of relief, knowing that any support existed, let alone the extensive amount provided here. From the first box of wound care supplies to the annual Benefit, the sense of community has been immensely helpful. Connecting with a large group of people who understood and not having to re-explain was refreshing. The wound care supplies provided by debra were incredibly helpful. These resources are not easy to come by, and during an emotional time, we didn't even know what to look for. That first box helped ease some of our burden. Even though our baby is no longer with us, we will always feel connected to debra.
A significant lesson I learned was the importance of advocating for yourself and asking questions. No one knows you or your child better than you do, so it's crucial to speak up if something doesn't seem right. An interesting aspect of our journey is that my amazing wife is a physician. It was incredibly challenging to watch her navigate the roles of both a mother and a medical professional at times. Tyden was fortunate to have her, and while this made decision-making regarding doctors, specialists, and hospital systems easier for us, it was still extremely difficult at times.
- Terrell, Dad to Tyden
Tyden’s strength and spirit continue to inspire us. At debra of America, we are committed to improving the lives of those impacted by EB through direct-to-patient programs, education, advocacy, and research.
We won’t stop fighting in Tyden’s honor and for all those impacted by EB. Your support ensures that families receive the resources they need, from their first box of wound care supplies to ongoing care, education, and community.
