Success Stories
Daylon's Story
Daylon was born on July 8, 2009 in Corona, California. At birth, he was given a life expectancy of approximately less than one year to live. Utterly shocked and heartbroken are words that can be used to describe what Daylon's parents, Brian and Jennifer, experienced during this time.
"I just kept thinking, this can't be happening," said Jennifer when she first learned that her son, Daylon, had Junctional Herlitz Epidermolysis Bullosa (JHEB). With this severe form of EB, Daylon suffers with blisters and sores on the outside and inside of his little body.
During the first several months, Daylon and his family focused on just trying to make it through each day. There were several nights a week where Jennifer would find herself in tears, because she had learned of something else that Daylon's skin couldn't handle and would end up causing him severe pain.
Jennifer and Brian felt as if she were watching their son die a little more each day. "The idea of outliving your child is more heartbreaking than I can possibly describe, and to not be able to squeeze and cuddle your baby in that precious time is almost too much to bear," said Jennifer. A gentle kiss, a rub, even holding Daylon in the same position for too long would blister and peel away his skin to expose raw flesh.
Learning to live with EB requires not being able to live a "normal" life. Daylon was in a constant state of pain, which had created much mental anguish on Daylon and his entire family. Limits are placed on everyday occurrences such as playing, eating, and hugging. Daylon and his family have had to adapt to the frequent stares from the general public. Also, he suffers from corneal abrasions, which are generally a result of trauma to the surface of the eye.
Finally, a ray hope came over Daylon and his family when they discovered headway being made at the University of Minnesota Children's Amplatz Hospital. "We did our homework on Dr. Wagner and Dr. Tolar and found out that they lead the Bone Marrow Transplant research in the country, and are recognized with high regards throughout the world," said Jennifer. They were the doctors who began researching for a cure for EB by using BMT's.
Their research shows that 100 % of their patients, whose bodies have accepted the donor cells, began to see amazing results. Brian and Jennifer were told that Daylon had less than a year to live, and he was reaching his first birthday. It was either try this procedure, and he might die or he might not, or try nothing and for sure he'll die. After heavily thinking over the decision, they decided it was worth the risk.
Daylon's 3-year-old brother, Caleb, was identified as an identical bone marrow match. Caleb bravely became his baby brother's Bone Marrow Donor. Daylon underwent a combination of chemotherapy and a BMT. He was the first patient with Junctional Herlitz Epidermolysis Bullosa (JHEB) in the world to receive this treatment.
The BMT staff has been trained and most have experience with EB, which was a major relief for Brian and Jennifer. "Being 1600 miles from home, they became our Minnesota family. We absolutely, emphatically LOVED our experience at the University of Minnesota They laughed with us, cried with us and became our friends. The hospital itself is top notch, with state of the art equipment to serve in each patients care. The hospital also makes sure that each parent is educated in how to tend to their patients new needs, so they're ready when the time comes to go home," said Jennifer.
Before Daylon's BMT, he had areas that were affected since shortly after birth. Also, his skin healed slowly, if at all. After going through a successful BMT Daylon's skin is much stronger. He has only been consistently bandaged on his right foot. The rest of his body has been able to withheld being exposed. He does get sores every so often, but they heal quickly.
Developmentally, Daylon is behind for several reasons, but it's a normal side effect of being weak and lying around for six months. However, with each day that passes he becomes stronger. Daylon is able to finally experience new activities and interact with others, without the fear of pain holding him back.
At 25 months, Daylon has finally started to crawl, play with toys, and eat graham crackers without bleeding. Daylon's family can tickle him, lift him from under his arms, and he can even wear clothes. "Our two boys have developed a favorite pass time together, catch!! That never would have been possible before," said Jennifer.
For Daylon and his family, they are still limiting their time in public places, but that should change in the future. Brian and Jennifer love the extra time they have each evening since bandage changes have almost come to an end. The anxiety that the whole house felt has lifted away. Jennifer says, "Our four older children now love playing with their new baby brother, Daylon."