White-Richardson, White & Simon Family Visit
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.
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