"Keric has epidermolysis bullosa, a rare genetic skin disorder. Basically, his skin, his DNA, is missing the anchoring fibers that layer our skin together. Because of that, any little rub or hit or pressure will cause these large painful sores like large blisters to form. We treat them essentially like a second-degree burn and we wrap them every day. Up to this point, there really had not been a cure, and it often took the lives of these kids in their mid 20s, due to a very aggressive cancer."
"I had an alert on my computer so anything with EB would pop up. In October 2007, I saw that they were undergoing a bone marrow transplant for the first time as a trial. In June 2008, the University of Minnesota made an announcement that they may have cured EB.
Immediately I got online and e-mailed Dr. Wagner, thinking I would not hear back from him for weeks. Within two hours he e-mailed me back. I was really impressed. Within two days I knew exactly what we needed to do."
"It took a couple of weeks to get back the blood tests. Kendall, my oldest daughter, was a donor. We met with Dr. Tolar and they felt Keric was a great candidate. It was just a matter of insurance. We figured our insurance company would deny it because it was a new treatment. Sure enough, they did.
Tim, the BMT coordinator there, said, 'we will take care of it.' Within two days they overturned the decision. Whatever the University of Minnesota sent convinced them that this was the appropriate treatment."
"I was a little nervous. Technically Keric would be the fourth child to go through a transplant for EB.
I felt like they explained things well. Dr. Tolar spent three hours with us on that first visit. We had a very sound base to make our decision. Dr. Tolar said, 'The only thing I can promise you is that he will get the best possible care here.' He followed through with that promise."
"After the visit with Dr. Tolar we felt very comfortable. We felt that we had the right team and that Keric would get the care he needed. When I did some research on the University, it was a top notch hospital. The staff was exceptional. I felt like they were really well trained and knew what they were doing.
I felt that Keric was strong enough to endure the transplant. If he could be cured from this horrendous disease to have a long life without cancer, that definitely outweighed the risk."
"When we came to Minnesota it was my husband and I, Keric and our daughter Kendall. She was the donor, so we wanted to keep her with us so she would stay healthy. Our middle son went home with my family. My husband traveled back and forth from Minnesota and home. We stayed at the Ronald McDonald House. It was nice to be there and have a hot meal every night.
The first ten days was chemotherapy, a day of rest and then we had the transplant."
"Kendall was excited about being the donor, because she wanted to help Keric, but she was a little nervous. She was really scared of needles.
The Child Specialists talked to her about ways that she could cope through the blood draws and the anxiety. They were really good about talking to her about each step of the way. They made sure she was comfortable and that her needs were met."
"From about 11 days to two weeks after the admission date, Keric developed complications. That part was very stressful because one minute your child is being silly and the next minute he is kind of in a comatose state, cannot breathe, and you just see him deteriorate right in front of your eyes.
The staff was very supportive and understanding. They come in and check on you 'do you need a break, can we help you?' He did a lot better after that."
"We brought our middle child Kacey to Minnesota and told him that his job was to get Keric home early. I think he felt left out of the puzzle. Kendall donated the bone marrow. Kacey did not feel like he was helping.
I said we need to get him motivated, get him eating, get him moving, and build his stamina. And so that is what he did. They played games and Kacey kept Keric motivated.
We actually did come home a few weeks early."
"The day before we knew Keric was being discharged, we smiled all day long. It was like walking on cloud nine. We were in the hospital almost 60 days.
It was just a great feeling, but it was almost surreal, because you felt like you were leaving a part of your family. Housekeeping came by and said 'good luck, we will miss you' and gave us a hug. The nurse technicians came by to see us off. It was joyful, but it was also sad because you were leaving your friends."
"We could tell within just a few weeks how much the transplant had helped. It seemed that he was healing quicker. By the time we left the hospital we could actually see his face getting better and his hands were looking better.
We were almost thinking, 'Are we imagining this?'"
"Before, we always hoped for the best, but we knew the things to come. Now he can be a normal kid. In the past we kept him pretty sheltered, he could not do a lot of running and we would not let him ride a bike. So now we are thinking that those are all possibilities. He will be able to be a normal kid and play sports. He can roughhouse and we don't have to say 'be careful, be careful, be careful.'
It is just truly amazing."
"Keric was excited to go home. Our family had a huge sign on the garage door that said 'Welcome Home Keric.'
Keric is talking about going swimming this summer. In years past, he would go swimming but every piece of him was covered with dressings. He would come in and we would do the labor intensive dressing changes that would take a couple of hours. By the time summer comes, he may not even be in dressings anymore."
Dr. Wagner is just so excited and so is Dr. Tolar, because not only are they learning how to treat and hopefully cure EB, but they are learning other things. Dr. Wagner mentioned that they may be able to help regenerate new skin for burn victims in the future. There is so much more potential here.