Hope for An Angel
Angelique was absolutley perfect when she was born on October 9, 2001. Her father nicknamed her Angel, and I don't believe a nickname as ever fit anyone as well as Angel fits her. As a young infant, she was always sick with ear infections or bronchitis. She was diagnosed with asthma before her first birthday. Despite her chronic illnesses, she was always giggling and smiling. Growing up she continued to be sick. She was even tested for Cystic Fibrosis, but that was negative. Doctors were clueless to what could be ailing her. One doctor had told be that some kids are just more sick than others. Angel had managed to stay out of the hospital until Feb. 2012. Her "asthma attacks" were increasing and becoming very scary. I took her to see her pulmonologist and from there she was sent to Tampa General ER for an evaluation. She ended up in PICU for two weeks. Through blood work, the doctors realized she had a critically impaired immune system. I realized this was now something that she would not outgrow. After the hospitalization, we saw an Immunologist at All Children's in St. Petersburg. Many genetics tests had been performed but yet no answers. Finally, the last set of tests were for a disorder known as severe combined immunodeficiency (SCID). Impossible, I thought. We finally got answers two months later. The only thing I remember the doctor saying is "you have been very blessed. Children do not live past the age of 2 without treatment and here is your daughter, 10 years old living with SCID, undiagnosed before now." Treatment for SCID is a bone marrow transplant. We were lucky to find out her younger sister was a perfect match. She went into the hospital August of 2012 to prepare for the transplant. By late October the doctors told us Angel's lungs were too frail for the transplant. We were referred to a doctor in Pittsburgh to have Angel participate in an investigational lung and bone marrow transplants. She was listed for a double lung transplant on July 2, 2013 at the Children's Hospital in Pittsburgh. We have since moved back to Angel's birthplace, Reading, Pa from Florida while she remains listed for transplant. This was not the life I had imagined for my daughter. My daughter, who once danced as a ballerina, struggles to catch her breath as she takes a few steps away from her bed. Angelique tires easily and finds comfort in her bed. Her day is spent hooked up to a feeding pump for 18 hours, inhalers every 3 hours along with chest physiotherapy four times a day, IV medications thru her PICC line and medications through her g/j tube that more often than not make her very ill with nausea. Her days are often lonely as she spends time isolated since she was diagnosed with SCID. She is still full of life, has the most memorable giggle and sweetest smile.