Jordan loved to draw and spent her free time doing so. This piece is submitted on behalf of Jordan by her parents who provided the title of the piece.
Chronic illness can leave people alone more often than not. Jordan felt lonely and missed her friends. She missed out on activities and felt she was not included because of being sick. We titled this piece “Will you remember me?” to portray the loneliness chronic illness creates and that Jordan felt.
This piece and title now has a second meaning for us. Jordan passed away from lack of diagnosis and treatment of her rare disease, primary myelofibrosis. We were told she was not diagnosed because the disease is not expected in children despite the doctors listing their treatment of this condition. We want doctors to remember Jordan and to look for the zebras. Look for the unexpected. Run the tests despite expectations. Disease knows no age, race, gender. “Will you remember me?” will be our anthem as we push for change in Jordan’s memory – a change in funding, in research, in legislation and in the medical community.