WHO I AM: Deb
WHO I AM: Deb (Julia's Mom)
There is nothing as powerful as mother's love, and nothing as healing as a child's soul.
Julia is the youngest of my 4 children. She was diagnosed with Cystic Fibrosis when she was 10 days old. Massachusetts had just begun newborn screening for the disease which is why it was detected so early. This was devastating news as we were informed that there was no cure for CF. We were stunned, not wanting to believe or accept this diagnosis. But it was soon to be her/ our reality
Through her early years she was hospitalized many, many times, averaging twice a year. But since CF is a progressive disease her hospitalization grew longer with each admission and closer together. She missed out on about one third of high school. My focus was on her happiness and quality of life, not her schoolwork
But Julia had diffent goals. As hard as CF fought her, she fought back even harder and didn't let the disease control her life. She excelled in high school and, beating all the odds, got accepted into Harvard!
She was able to attend about one half of her first semester there. Her biggest achievement in the short time she was there was being chosen to be a part of IGP, an elite improv performance group of students at Harvard, where she shined. But despite her perseverance, the disease took its toll and forced her back to the hospital. Her dream of Harvard and IGP is now on the back burner as she sits in the hospital awaiting a lung transplant.
Julia is a beautiful young lady, full of sass and sharp wit. She is very loving, engaging, smart and creative, all while being aware of her need for a transplant. I feel, if healthy, she really could do anything she wants to do. But having a chronic disease is very challenging, physically and emotionally.
I long to see my daughter healthy, hanging out with her siblings, cousins, friends, going to college, travelling, falling in love... doing all of the things any parent hopes for their children. One day, with new lungs from the grace of a donor and their family, this could be a reality for Julia.
This disease sucks, as most incurable diseases do. Hopefully there will be a cure in the future. That being said I can't imagine my life without her.
I think most people who know her would agree.