Jamila Aisha Jones was born on September 28, 1982 to parents Jonathan and Valerie Jones. She was the third of four children. Her perseverance and will to survive were evidenced even at birth. Though full-term, she remained in her mother’s womb too long and thus had to be hospitalized in an incubator her first two weeks of life. She began her education at an early age at the Susie Labord Day Care Center and M.L. King, Jr.Pre-school. After attending kindergarten at C.W. Hill Elementary School, she attended the International Preparatory Institute (IPI) where her artistic talents began to blossom in dance and as a cheerleader (art was in her veins: mother and father were both singers, father played brass instruments, mother was cheerleader, paternal grandfather was artist – he drew as a hobby and for his and co-workers school bulletin boards, paternal grandmother was a pianist and also played brass instruments, maternal grandmother and grandfather were singers). She continued her education in the Fulton County School System at the S.L. Lewis Elementary and Camp Creek Middle Schools where she participated in Chorus, Spirit Team and Dance. After auditioning and successfully being selected, she entered Tri-Cities High School for Visual and Performing Arts. There, her major was Chorus, but she also participated in several Drama productions. She was also an athletic team trainer. As a senior, she was a runner-up for Ms. Tri-Cities. Following graduation, fall 2000, she attended the Savannah College of Art and Design (SCAD) where she majored in Fashion Design, an interest begun at an early age designing and cutting out paper doll fashions. After a short matriculation, due to illness, she returned home, still with a burning desire to complete her education. While in Savannah, she had complained of severe pain and swelling in her joints, particularly her legs and ankles. This caused her to make a visit to the emergency room, where the symptoms were treated with antibiotics and painkillers.

Upon her return to Atlanta, her visit to the doctor was initially diagnosed as “tight shoes”. (Lupus can be a very difficult disease to diagnose. In fact, it has been called one of the most misdiagnosed diseases.) However, a physician’s assistant (PA) noted that the conditions were very similar to those of Lupus and recommended a visit to a rheumatologist.  This resulted in her diagnosis of Lupus at the age of eighteen. However, at this time, the disease was primarily in remission and she was able to continue to pursue her education. She attended Morris Brown College, continuing her interest in Athletic Team Training, majoring in Physical Therapy. After a short stint there, she transferred to American Intercontinental University (AIU) returning to study in her passion for arts with a major in Fashion Design, then to Graphic Design and Photography, where she was less than one-year away from receiving her bachelor’s degree. Yet, it was during this period that her body began to come under attack from Lupus, a chronic autoimmune disease that afflicts more than 1.5 million Americans and can affect any part of the body including joints, skin, lungs, heart, nervous system and blood vessels. 

Jamila began to take a battery of prescription medications, many, including prednisone, whose side effects could be as or even more problematic that the disease.  Many of the characteristics of the disease became more apparent: butterfly rash (lupus rash over the cheeks and nose); oral ulcerations (recurrent sores in the mouth); arthritis (inflammation of two peripheral joints with tenderness, swelling, or fluid); blood abnormalities and organ threatening conditions such as serositis (inflammation of the lining of the heart – also called the pericardium) and kidney disorder. The serositis led to open heart surgery and the removal of the pericardium. The kidney disorder led to acute renal failure and the need to be placed on dialysis.

Yet, in spite of all that she endured, Jamila, our “Purple Butterfly”, continued to persevere.   In January 2005, SCAD announced the opening of an Atlanta Campus. Jamila had begun the process to enroll for the spring quarter 2005 and complete her undergraduate education at the college where she started. Her perseverance and will to survive despite all odds remained steadfast. Yet, during the last eighteen months of her life, she was not out of the hospital for one problem or another for all of any one month (30-consistent day period).Jamila also desired to be independent and had several jobs including the Georgia General Assembly, Hartsfield Jackson International Airport and serving as a supervisor at Turner Field in the Braves Retail Store. Since a young child, she was active in church at Saint Philip A.M.E. Church. She worked in the Church Nursery and was a Sunday Receptionist.

But her passion was singing and what a voice she had. She was very active in the Youth and Young Adult Choirs, always ready if called upon to sing a solo. There may have been many soprano voices in the choir, but Jamila’s voice was the main one and most distinct. Though her illness had prevented her from being involved in many activities, in January of 2005 she joined the W.N. Griffin, Jr. Gospel Choir (named in memory of her “Uncle Jr”). She was able to attend two rehearsals but did not perform.

In literature published by the Lupus Foundation of America, Inc., Georgia Chapter there is a statement that reads: “Imagine living each day with an incurable disease. Now imagine that no one believes you”.  That was the case for Jamila. The great irony of the situation is that the last physician to see Jamila, just three days before her transition, was the Medical Advisory Chair for the Georgia Chapter of the Lupus Foundation. At that time, he was still questioning the seriousness or even acceptance that her condition was caused by Lupus. He stated that it might just be: “all in her head”. At the time he saw her, she was very ill. The pain had become so great that her voice had become a whisper. Unfortunately, he was not alone in his assessment. Other rheumatologists had also expressed some doubt in the seriousness of her situation.

Shortly before her transition, Jamila had written several “Long-Term Goals”. These were: 1) to come off steroids (prednisone and others); 2) to return to school, work; 3) to be in remission (from Lupus flair ups); 4) to stay out of the hospital; and 5) to come off all medications and not have to have dialysis (to get a new kidney). Unfortunately, she was never able to obtain any of those long-term goals. On April 8, 2005, Jamila made her transition. Following her transition, the Medical Examiner did an autopsy. Contrary to the doubts of some of her physicians, the findings were conclusive; the cause of death was “complications related to Lupus”.

In the weeks preceding her transition, Jamila made a couple of brief, yet profound statements, their significance not known at the time. These were: 1) “No Fear” – now believed to mean that she did not fear her transition; and 2) “I’m Free” – announcing her vision of her transition soon to come – her metamorphosis from caterpillar to butterfly. The Book of Psalms in the Bible is a book of poems. My favorite is the 23rd Chapter. Verse four of that chapter says: “even though I walk through the valley of the shadow of death, I will have no fear of evil (the enemy) – death is said to be the “last enemy”, for you are with me; your rod and your staff, they comfort me. In the 118th Chapter, verses 5-6 say: “in my anguish, I cried to the Lord, and he answered by setting me free. The Lord is with me; I will not be afraid (have no fear).  In retrospect, we now realize just how in touch she was with the creator of all life. Jamila’s favorite color was purple. Her favorite object was the butterfly; hence, the significance of the birth of the “Purple Butterfly”. In May of 2006,  “The Purple Butterfly, Inc.”, a non-profit 501(c)(3) corporation,  was founded in Jamila’s honor and memory to aid in the struggle against Lupus and to undertake activities to bring about more awareness and education about the disease, particularly among women, youth and minorities, especially African Americans, those most commonly affected by the disease.  Though her physical body has been transformed and she has transitioned from this earth, Jamila’s spirit and soul shall forever remain with us as will her strength, perseverance, hope and will to survive “against all odds”. Her “Long-term Goals” have become our goals for all those suffering from the disease and thus the work of “The Purple Butterfly, Inc.” shall continue and grow in her honor and memory. www.purple-butterfly.org