Ashley B. - Quilt Finished in 2006

Born: August 29, 1989

Illness: CNS Vasculitis/CNS Lupus, Dementia, Psychosis

Ashley B.'s Story

written by mom Karen

Ashley was born August 29, 1989 in Portsmouth, VA.  She had a normal childhood and developed on tasks physically, emotionally, and psychosocially.  Ashley went to school like other children, got average grades with As, B's, and C's and did what other preteens do.  She played with her dog, her brother, did her homework and cleaned her room.  One day in the winter of 2002, when Ashely was 12 years old, everything changed.  When I went to school to pick her up, she wasn't in the "regular spot."  I searched for her and found her with the Assistant Principal.  Ashley said that she wanted to injure herself; she was extremely tearful and incoherent.  I didn't recognize this as being my child.

Shortly after this episode, I did what most parents would do, I took Ashley to a psychiatrist who started treating her for mild depression.  Within a year Ashley progressed from mild depression to severe depression and psychosis with a rapid onset.  In 2003, Ashley woke up one day and literally forgot how to tie her shoes.  In late 2004, Ashley developed Dementia.  She forgot important milestones in her life, forgot how to use the microwave, and even forgot how to dress herself independently.

After two years of tests and multiple doctors and disciplines many of which didn't believe that anything was wrong with Ashley, we finally got a diagnosis.  In June 2004, Ashley was diagnosed with a rare condition called CNS Vasculitis.  In the adult population it affects 1/1,000th of 1%.  In children it is even rarer than that.  It involves chronic inflammation of the vessels even the smallest ones in the brain and sometimes the spinal cord.  This chronic inflammation results in mini strokes, psychosis, mental status changes, dementia and in Ashley's case regression.  She is 16 years old now but has the mentality of an 7-8 year old.

Ashley takes 16 medications every day, has trouble with walking (poor endurance and unsteady gait), receives chemotherapy, wears a mask because she is so immunocompromised, and takes an antibiotic, Bactrim, everyday to prevent her from catching pneumonia.  Ashley is homeschooled and participates in activities tailored to her needs and abilities including: therapeutic art (helps her hand tremors), therapeutic horseback riding (helps her strength and balance), and therapeutic karate (helps her meditate and learn to focus energy and body off of pain from painful procedures and tests; improves her strength).

Written by Ashley's mom Karen in December 2005