She is an artist, a musician, a student, –a Survivor

Julie Jumamil receives her Cardinal pin at UIW

Jules Jumamil wears her UIW pin proudly

Yesterday she achieved her second milestone in her life. She accomplished the first in June, when she walked across the stage at Northside and received her diploma.

For most individuals graduating from high school marks the transition from childhood to adulthood. For Jules, this accomplishment meant so much more. This accomplishment testified about the strength of love of family and determination of a young girl.

When you visit with Jules, her most noticeable feature is her smile. She makes eye contact and her smile lights up the room. As she talks about the future, college, and her career you soon ignore the oxygen line and focus on her burning desire to conquer life.

Jules started playing the piano at the age of three. She is an accomplished pianist. She loves to draw and her artwork is noteworthy. She loves science and hopes to earn a degree in pharmacology so that she may become a pharmacist to help others. She too dreams of having a family.

However, for Jules the simple task of running around the block remains allusive. For most of her childhood she was not able to play hide and seek with her neighbors. She was not able to jog or run to relieve stress. At times simply walking from class to class could become a very taxing activity.

Jules was diagnosed with Idiopathic Pulmonary Hemosiderosis (IPH) at the tender age of four. This is a rare genetic disease causing the lungs to bleed and scar limiting the flexibility of the lungs creating a difficult time to breath.

Jules is one of the lucky ones—her pulmonologist was able to recognize the symptoms and provide a diagnosis at the age of 4.  

Doctors understand little about this disease. The cause has been recognized as genetic. Before the early 1900’s doctors were only able to diagnose the disease after the person succumbed to the symptoms.

Currently there is no cure. Patients are provided medicine and oxygen supplementation to help with breathing. Doctors limit physical activity to ease the stress on the lungs.

Jules exhibited symptoms at the age of 18 months. Doctors provided the diagnosis at the age of 4. Research and medical journals testify to the bleak prospect most young children can expect when diagnosed. Most are not expected to live past their eighth grade graduation much less their high school graduation.

Jules and her family mark each accomplishment many take for granted, earning a drivers license, high school graduation, college graduation, first kiss as more than transitioning into adulthood but as major milestones of beating the odds and escaping the ultimate fate.

Jules does not consider her condition as a hindrance to her life—but as a unique opportunity. As she commented, “When God closes one door he opens another.” And open doors He has. Jules plays the piano, creates artwork in different mediums, reads furiously, and even designs fashion ware. For someone who is “limited physically” Jules can exhaust even the most trained athlete with her activities.

Her favorite book is George Orwell’s 1984. “It has a much deeper meaning, and certainly can be applied to today’s society. The government is everywhere and it can change our perception of life.”

Jules and her two sisters are very close. Jules supports them as they continue their career in music. Her sisters watched over her as she traveled the halls at O’Connor High School. One of the hardest lessons the family had to learn was to allow Jules to travel on her own. This lesson will become even more difficult now that she is across town studying at University of Incarnate Word.

Not graduating from college is not an option for Jules. She wants to become a pharmacist because of concrete answers. The pharmacists understands medicine and can help families understand how the medicine affects the diseases it is meant to combat.

“I want my friends and peers to understand having dreams is good; however, without hard work you can never accomplish your dreams. Without work your dreams will never become reality.”

Jules remains committed to her family, friends, and volunteers once a week at Mystic Park Place.

Jules has learned to be upbeat. Yet during one of her hospitalizations she remembers becoming very sad. “I asked why me? I thought at that time I would not graduate from high school or walk the stage. I didn’t think I would go to college. I didn’t think I would do much.”

As a seventh grader the Make a Wish Foundation honored Jules wish. She was able to attend a Taylor Swift concert. Swift visited with Jules before the concert. “She was very tall. She was very sweet. I loved her music when I was younger. As she has become older her music has matured.”

Although T Swift may be her celebrity “hero” Jules remains grounded and thankful for her family. “My sisters have helped me with problems and school work. My family, especially my parents are there for me when I become sick. The winter months are really difficult and if I cough to much or too hard, my lungs begin to bleed—my parents will be there.

Jules mom describes her as a strong individual, emotionally stubborn who want to accomplish any task. However, she is beginning to understand limitations. Jules’ mom takes a moment before she shares her final thoughts.

“I remain grateful—grateful for the challenges, grateful for the bad times which teach us to be stronger as a family. I am grateful for the Angels along the way, the doctors, nurses, strangers who we have met along this journey. I am grateful for 3 kids. I feel blessed this whole journey because it has not been as hard as it could be cause Jules is so well grounded. I am thankful for NISD and the programs they had to help Jules from Kindergarten to graduation. Many say our life could be worse, but I believe the glass is half full not half empty.”

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