Juan David Duran
Living with Hunter Syndrome
At home in Oakland, CA, Juan loves to play, watch TV and listen to music. Now six years old, Juan experiences a lot of hyperactivity. “We are always doing something!” laughs his mother, Maria. “I show him coloring books, and he colors, after a while though he gets bored, so we play ball. Then we listen to music and dance. His therapist tells me to set up routines but he doesn’t like it. He likes change.”
“I couldn’t believe it. I thought maybe Juan suffered from a learning disability or autism, but I never expected him to have a disease I had never heard of.”
Based on Juan’s sporadic temperament, Maria encourages activities that help him to interact better with other children. Because Juan doesn’t speak many words, most of his communication is a combination of non-verbal gestures and screaming, which most people—children and adults—don’t understand and outwardly reject.
“When I take him out to the park, he tries to play with the other kids, but because of his way of communicating, they often turn him away or bully him.” Understandably, Juan becomes frustrated when people ignore or tease him. “When they try to talk to him,” Maria explains, “he doesn’t respond or he yells. So, they back away and ask what’s wrong with him. It’s hard to explain that he doesn’t have autism but a more rare, genetic condition.”
For the first couple years, Juan showed no noticeable signs of abnormal health or behavior.
But by age two, he wasn’t making progress towards vocalizing words. He then began suffering regularly from ear infections and respiratory problems. These chronic ailments, combined with an apparent cognitive delay, prompted the involvement of a geneticist who was able to diagnose Juan with Hunter syndrome, also known as MPS II.
Maria was both shocked and devastated by this news. “I couldn’t believe it. I thought maybe Juan suffered from a learning disability or autism, but I never expected him to have a disease I had never heard of.” Maria’s physician told her that Hunter syndrome would cause her son’s organs to be larger than normal and that he would continue to suffer from respiratory problems, sleep apnea, ear infections and cognitive issues. Worst of all, he would only live another four to six years.
Unsure of where to go for support, Maria began researching Hunter syndrome. The results she found scared her even more. “I didn’t think it was real because physically, Juan looked fine. The most noticeable difference from other children was his learning capacity and that it was not easy for him to interact with other children.”
Juan’s condition sparked new challenges that his father was unable to accept. Soon after receiving a diagnosis, the couple divorced and Maria began raising Juan independently, with the help of her mother. Maria admits that being a single mother is hard, but more difficult is the loneliness she feels from her and Juan being socially rejected.
Due to a general lack of acceptance from their neighbors, including complaints about Juan’s yelling, Maria was forced to move from her apartment complex. Unable to find another apartment nearby, they moved to another city, uprooting the family and causing Juan to switch schools and lose the classes he was taking. Maria is especially emotional about the disturbances this has caused:
“My son is special. He communicates in his own special way and has his own unique way of viewing life.”
“At the other school, Juan was doing so well. He was in class with other kids who are normal, and he was learning to say more words and to better interact with the other children. Now at his new school, he is in a classroom with kids who don’t talk or walk, and who are aggressive and have behavioral problems such as biting and hitting. Now Juan is hardly talking or playing, and he is starting to bite and hit. It’s a major setback, since Juan had been making progress with help from his teachers, therapists and family.”
Maria is now passionately advocating for Juan to be transferred to another school with a better capacity to meet his needs—a happy and healthy learning environment where Juan will thrive instead of being socially scrutinized.
Caring for Juan has given her a great deal of patience and the ability to accept life by loving unconditionally. She wants Juan to have as normal of a life as possible. “This is the hand I was dealt. My son is special. He communicates in his own special way and has his own unique way of viewing life.” Taking a breath Maria lovingly shares, “Juan is so happy and loving—other people should see that. He is my reason to live.”
Levi Gershkowitz is a photojournalist who is committed to presenting a dignified perspective of people living with rare diseases. For more information, visit Living in the Light™