KLS patient Alanna Wong and her family recently flew from Seattle to meet another KLS family, the Farbers in Massachusetts for a poignant meeting. Both families have a daughter with KLS. Arielle Farber has struggled with many KLS episodes over the past 14 years. Alanna Wong has been suffering from KLS for four years although she was only recently diagnosed. Dealing with KLS is difficult in the best of circumstances, but experiencing four years of KLS episodes without receiving a correct diagnosis or knowing what they were dealing with was extremely frightening for the whole Wong family. As Alanna and her mother Diane explain, in addition to the fear of having a sick child, there is an added level of stress and suspicion regarding the unexplained behavior of a KLS patient who has not been accurately diagnosed.
Through the outreach efforts of the KLS Foundation there have been numerous informational television programs about KLS in recent years. It was one of those shows that finally steered the Wongs to the KLS Foundation, where they received much needed information and support. Alanna and her parents have expressed how very helpful it has been to learn that there are other families who know and understand what they are going through. It is comforting to find others who can relate to their experiences intellectually as well as emotionally.
A British television company that is preparing a documentary about KLS approached the Foundation asking for help finding KLS families to participate in the documentary. The film brought the Wongs to Boston for a full day of filming at the Farber home, allowing Alanna and her parents to meet another KLS family for the first time. The show which will feature the Wong family, is expected to air in Britain in the fall of 2008.
The meeting of the two families was an intensely emotional experience for all involved. For both the Farbers and the Wongs, sitting with others whose lives have also been deeply affected by KLS felt like being with family members who have lived through shared experiences. The Wong family is extremely appreciative of the KLS Foundation’s help, and they are now participating in the Stanford University KLS research program. For more information on how you can participate, please contact the KLS Foundation or the Stanford University research team at Phone: 650725-1773 or 650 498-4484