By Dante Venema
Daddy to Brooks
Epidermolysis Bullosa Simplex – Generalized Severe
February – July 2025
Our journey started on February 22, 2025, when Brooks was born eight weeks early in Bismarck, North Dakota. It was an emergency C-section, so I wasn’t able to be in the room when he was delivered. Once I got the news he was out and found out I had a little boy, a doctor walked me to the NICU to explain his situation.
She told me that he would look a little strange when I saw him. As they rolled him past me, I understood how right she was. Brooks weighed just over 2 pounds, and his arms and legs were a bright red. It was almost as if I could see into his extremities. It was a surreal and unforgettable sight.
The doctor explained that they weren’t totally sure what was going on, but that it could be something called Epidermolysis Bullosa. Before then, I had never heard those words. She said that his limbs would need extra care and protection because they looked to be missing a layer of skin. I sat and watched for a while as nurses prepped my little boy to get him comfortable.
After a while, I went downstairs to see my wife, Olivia. She was just waking up from surgery when I came in, and I relayed the information I was told. We were in total disbelief about what was going on.
That night, the doctor came to our room to talk to us more and informed us that they thought the best course of action for Brooks would be to send him to Minneapolis, Minnesota, to get care for what they thought was EB. We were shocked and disappointed that our son would have to be taken away so soon. Olivia hadn’t even seen him yet.
Luckily, she was able to get up to the NICU the next day, and we were able to share some special moments as a family before he was transported to Minnesota. He was flown out the day after he was born, and Olivia and I joined him in Minnesota a few days later when she was discharged from the hospital in Bismarck.
In the beginning, we had no clue what to expect. We had no idea what EB was or had even heard those words before. As first-time parents, we were fearful for Brooks’ future and what it would look like. How would we get him the care and support that he needed? We didn’t know how we would cover the medical expenses and everything else entailed in his care, but we would do everything in our power to give him the best life he could live.
All we could do was support him as best we could and trust that God had a plan for our sweet little boy.
After a few weeks in Minnesota, the genetic testing came back positive for Epidermolysis Bullosa in Brooks. He was diagnosed with Epidermolysis Bullosa Simplex – Generalized Severe, which affects the outermost layer of skin. We began learning how to care for Brooks and what to do to support him. His body had to be bandaged from shoulder to toe in Mepilex Transfer covered in Vaseline. Then we placed Tubifast over the Mepilex to keep the dressings on. It was crucial that we used Vaseline on everything because any little friction would cause his skin to blister and tear, causing immense pain for Brooks in the affected area.
It took a few weeks, but Olivia and I soon began doing his dressing changes and got to the point where we could do them on our own. We did a dressing change every day, sometimes multiple times if things started to slide off. We were told that this was how life would be for Brooks: highly effective drugs to minimize pain and constant dressing changes. It was a lot to take in and work through, especially because the dressing changes were so traumatic for Brooks. It was hard to see him go through so much pain during something that was supposed to help him.
However, we stayed determined to do what was best for Brooks, and we WOULD give him the best life possible.
Brooks spent his entire life in the hospital. We were fortunate enough to be by his side the whole time, as we were able to stay at a Ronald McDonald House in Minneapolis. After each dressing change, we would take him out to hold him, and his mom and I would read him books. It was our favorite part of the day and seemed to be his calmest moments. Staying in the hospital for so long was mentally exhausting, but as Brooks improved, we saw the potential day we would bring him home.
However, during the last week of June, Brooks’ health went downhill. There were some things going on internally that were missed, and he got very sick. All of the progress we made on weaning his medications was lost, and he went back on all of his medications through his PICC line, at levels that most would not survive.
It was then that we were told Brooks might not make it out of the hospital.
We were devastated after hearing this news and didn’t want to give up hope, but we knew that Brooks had been through enough pain for 1,000 lifetimes. We decided that the best course of action would be to make him as comfortable as possible and make as many memories as a family as we could.
That is when we were told about On Angels’ Wings.
The social worker helped arrange services with OAW, and our photographer was there within the next day. We were so grateful to get some real family photos together. Nothing about our experience seemed normal, and to be given that opportunity was amazing. We were able to get pictures of Brooks on his own and pictures together as the loving family we are.
Brooks passed a few weeks later. Life without Brooks feels empty. It’s hard to comprehend everything that we went through, but we are grateful that Brooks suffers no more. He was a light that brought out the best in us and continues to do so. I don’t think we will ever be the same after this loss, but we will live life more grateful and to the fullest.
We will live the life that Brooks never got to. We will live like Brooks, and for Brooks. Our son’s diagnosis opened our eyes to so many who go through what Brooks went through each day. Throughout our whole experience, we learned that we are fortunate to live each day without ailment. If there is one thing we can take away from everything, it’s that we should be doing more to help others.
I want the world to know Brooks’ story and the pain and trauma that comes with living with EB. But even more, I want them to know that he was more than his diagnosis; he was a fighter. Brooks never gave up. He fought his hardest and was able to bring us joy in the hardest of times. Brooks loved music. He would always stop crying when music therapy would sing to him. He loved bouncing and laying in his mama’s arms. He also loved being read books or being told stories. All of these things brought joy to Brooks.
We’ll never see our son in this life again, but we know he’s waiting for us on the other side. We can’t wait for the day we are reunited.
We will continue to live life for Brooks, with the intent of sharing his story with everyone we can. Our plan is to start and found the Live Like Brooks Foundation to raise money and awareness for Epidermolysis Bullosa and provide support to families who live every day with EB. We hope that we can be a light to others and make their burdens lighter. This is how Brooks’ legacy lives on and how we honor him.
On Angels’ Wings has given us the chance to make memories with our son that we wouldn’t have been able to otherwise. They gave us pictures that we can keep close to us for the rest of our lives and remember the sweet soul that our Brooks is. We wouldn’t have had professional pictures of our son if it weren’t for OAW and wouldn’t be able to connect with each other as deeply if not for this experience.
On Angels’ Wings is a light in the dark and gives people an opportunity to see the good in this world.
