Our journey with EB started when our son, Brooks Tanner Venema, was born on February 22, 2025. Brooks was born 8 weeks premature via emergency C-section and weighed 2.12 pounds. Shortly after his birth, a doctor walked me, Dante, to the NICU floor and explained that there was something we should be prepared for. From the moment I saw him, I was in love. But I could tell there was something wrong with his appearance. As they wheeled him past me in his bed, I couldn't help but feel confused. Brooks' legs and arms appeared bright red, almost as if I could see through his skin and into his limbs. It was unnerving at first, and I remember thinking, "This isn't how it's supposed to be."
It wasn't until my wife, Olivia, was awake and recovering from delivery that we first heard the words "Epidermolysis Bullosa." The team wasn't 100% sure, but they were pretty sure he had EB. It sounded like they were speaking in a different language. My wife and I had no idea how our lives were about to change, but it happened fast. The doctors informed us that they didn't have the resources to care for EB at the hospital in Bismarck, ND, so he would need to be life-flighted to Minneapolis, MN for treatment. Brooks was flown out the day after he was born, only getting to be held by his mother for a few short minutes before he had to go.
Once Olivia was discharged a few days later, we made the 500-mile trip to Minneapolis to be with Brooks. Amid confusion, worry, and fear, we were taken in by the Ronald McDonald House Charity for our stay. It became a safe haven for us, and we are forever grateful for the wonderful organization that it is. After almost a week of not seeing our baby boy, we were able to be next to him in the NICU as we began learning what Brooks was dealing with. Testing was done, and soon thereafter, Brooks was diagnosed with Epidermolysis Bullosa - Simplex - Generalized Severe. The confirmation of the diagnosis made reality set in, and we soon dove into learning all we could to be able to care for Brooks. After about a week and a half, we were able to do his dressing changes on our own, with the help of his fantastic nurses.
The road to Brooks' progression to be able to come home with us was long and hard, but he fought every day and showed us what true courage and perseverance looks like. Some days were easier than others, and we felt very confident in what we were doing. However, the really bad days were hard and almost unbearable. If it weren't for our faith in God and the plan He had for us and Brooks, I don't think we could have done it.
As Brooks continued to grow, we kept getting closer and closer to bringing him home with us. He had finally gotten a G-tube placed so that he could be fed more easily and receive his pain meds orally. We were excited to be nearing the end of a long hospital stay when things took a turn. Brooks developed another hernia, which he had when he was born. He also had a lot of sloughing around his PICC line area, and the skin around his G-tube was becoming more irritated and blistering. In addition to all of this, he couldn't get through a full feeding without getting upset, and his feeding times increased well over the recommended time for someone his age and size. Shortly after this, his medications were switched back through his PICC line, and the doses were increased to help ease his pain. All of the progress he had made was suddenly gone.
It was at this time that we were first told that we may have to focus on just making Brooks comfortable for the time he had left. We were devastated to hear that we would not be bringing our son home. With the time we had left with him, we were fortunate enough to have his grandparents, aunts, uncles, and cousins visit him before he passed. A few days after they left, Brooks was transferred into hospice care, where we were able to spend every moment with him in his last few days. On July 5, 2025, Brooks took his last breath as we laid next to him.
I wish that more people understood how serious and painful EB truly is to those who suffer from it, as well as the family members who have to see their child, sibling, cousin, etc. suffer. I also wish that people knew how courageous and strong individuals with EB truly are.
debra of America has been a great support to us through our experience with EB. When we first found out Brooks had EB, a debra nurse called us and gave us many resources to use and also explained many things regarding EB that we should expect. She also checked in from time to time to ask about Brooks and how he was progressing. debra of America also supported us by sending a box full of dressing supplies for Brooks. This was a great comfort as first-time parents who had just learned what we needed to care for our baby. debra has been a great resource and outlet for us to use through our experience with EB. They have been there to support us along with so many others. It was always reassuring to find the answer to a question through debra whenever something came up.
We would just like to share that the EB community is the kindest, bravest, and most selfless community I've ever been a part of. Although our son is no longer with us, fighting EB, we want to be an outlet of support for this community and do our part in helping to find a cure. Our goal is to start a nonprofit organization in honor of Brooks that will raise money to help support the fight and all families that suffer from this terrible condition.
- Dante, Dad to Brooks
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 Brooks' 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.