Honolulu Boy Thriving In Spite of ARPKD

Byron Washington recently contacted the PKD Foundation for help in finding a geneticist to study his son, Jaelan, who turned 6 in April and had been diagnosed with ARPKD soon after birth. He is currently doing so well that his parents wonder if understanding Jaelan’s excellent medical status might help other children with ARPKD.

Byron and his wife, Tomoko, (originally from Japan) live in Honolulu. They also have a 4-year-old son, Johriel, who does not have ARPKD. The Washingtons, who live in a place many consider paradise, feel that their greatest gift, however, is that Jaelan is thriving, despite his condition.

Tomoko and Byron had never heard of PKD before their son was born. During Tomoko’s pregnancy, doctors noticed that the baby’s kidneys seemed somewhat abnormal, but they expressed no panic or serious concern at that point. Within a few days of Jaelan’s birth, however, the Washingtons learned that Jaelan had ARPKD.

After the diagnosis, Byron was angry, thinking that he and his wife had been kept in the dark about Jaelan’s diagnosis. Byron wondered if things might have been different had they learned sooner about the disease. Byron’s anger was real, but, in fact, doctors had been honest with the Washingtons since they diagnosed Jaelan. Jaelan has had the same pediatric nephrologist since birth someone who has offered Byron and Tomoko support, information and a true picture of what could happen.

Currently, Jaelan lives a very normal life. He is in kindergarten and of average height and weight. Like other boys his age, he likes to play outside, enjoys Power Rangers and is involved with flag football. According to his parents, Jaelan also has an artistic talent and really likes to draw. He takes no regular medications, follows a normal, healthy diet and visits the doctor only once or twice each year.

Jaelan does not know that he has ARPKD. Since he does not have any major PKD-related problems, Byron and Tomoko do not want him to know about his illness unless it becomes necessary. They want him to continue to be as unaffected as possible. The only issues Jaelan has faced so far include frequent urination and an increased tendency to be thirsty. It also took him longer than normal to be potty trained.

At the moment, the future looks bright for Jaelan. He has passed one critical point his fifth birthday. That is when his body chemicals changed, and the Washingtons were told his situation could have worsened. It did not.

They have also heard that another critical point will be when Jaelan turns 13 and, again, his body will change with puberty. If he gets through that point with no major issues, Jaelan’s future may be much more secure. For now, though, there is still a question mark.

How do Tomoko and Byron cope? They feel fortunate to have a wonderful doctor and the support of each other, as well as family and friends. But, living in Hawaii without other families close by who have dealt with ARPKD has left them feeling a bit alone at times.

After Byron graduates (he is working on his degree), they plan to relocate to the mainland and hope to feel less isolated. For now, the family is fairly happy and positive about the future. Byron encourages others in similar situations to become informed and “keep up hope.”

For more information about Jaelan Washington, you may contact the Washingtons at bjwashington32@hotmail.com.