CRND was pleased and honored to host the White-Richardson, White and Simon family on March 23rd. The visit was the culmination of a continuing conversation between the family and students Natalie Bott and Aaron Patwahl (see RAREhealth Exchange on page 6).
Ms. Jennifer White shared her experience navigating the medical system when trying to understand her son’s (Tylor White-Richardson) disease. She delved into the medical literature, joined family support groups and sought out medical experts. When the leading hospital in Iowa could not provide a diagnosis, she specifically requested a referral to the Mayo Clinic. Mr. Brian “Sy” Simon has been at Jennifer’s side and wholly supports their family.
A Mayo physician did finally provide the diagnosis of Niemann Pick Disease Type C. Dr. Marc Patterson, in particular, began an incredibly supportive relationship and continues to attend to Ty with compassion and humor. Both Jennifer and Sy appreciate Dr. Patterson’s style and told pre-professional students, “Be a person, not a clinician, and treat patients as people.”
The family handles challenges with aplomb. When Tylor required the use of a wheelchair, they found the right resources and had one custom-built. They had a wheelchair-accessible van re-fitted for Tylor and travel across the country. Jennifer, Ty and Sy maintain an active lifestyle and help mentor new families. Because the National Niemann Pick Disease Foundation has been a valuable resource, they keep strong ties.