Help Kayla Get to Boston Children's Hospital
Organized by: Caroline Kiss-Lee
Boston is Right Around the Corner
January 04, 2017
Kayla is a bright, beautiful 15-year-old girl, and she is a fighter. Starting at 6 weeks old, she was diagnosed with Respiratory Syncytial Virus (RSV). While this is a common disease among children, it affected Kayla tremendously. She was hospitalized and she coded twice. Her ICU doctor told her parents that she would have a difficult life with many medical issues. They hoped that would not be the case, but, unfortunately, he was right.
From the time they took her home from the hospital, she faced one medical issue after another. At 4 months, she had ear tubes put in. At 6 months, she was hospitalized for pneumonia. At 3 years old, she received her 2nd set of ear tubes and had her tonsils and adenoids removed. Permanent ear tubes at 5 years old and then, at the age of 7, she was diagnosed with Type 1 Diabetes. It didn't stop there.
At 8 years old, she was diagnosed with Celiac disease and also started using an insulin pump. Then at 10 years old, she was diagnosed with Juvenile Rheumatoid Arthritis (JRA). But....it didn't stop there. She received a G-tube to help with weight gain because of the effects of Celiac disease and other complications from her diabetes. At 11, another diagnosis - Osteopenia/Osteoporosis. Surgery on both knees at 14, and most recently she has been diagnosed with Addison Disease.
Kayla receives monthly IV infusions to help her manage her pain. Daily, she monitors her blood sugar with multiple pricks to her fingers and glucose tablets. She also has to monitor all of her food intake, every day, to ensure that she does not eat any wheat or gluten, as well as count her carbs to balance her insulin levels. In addition to the daily monitoring, Kayla takes multiple medications. Her list of prescriptions currently stands at 10.
Despite all of these struggles, Kayla still maintains a GPA of almost 4.0. She stays active by playing soccer for AYSO, helps coach her little sister's soccer team and also helps with her sister's Camp Fire and Girl Scout troops. Looking at Kayla, you would never know what she struggles with every day because she always has the biggest smile on her face.
After months of trying, her parents were finally able to get Kayla appointments at Boston Children's Hospital with the top doctors in the nation who specialize in patients with multiple auto-immune diseases. With the complexity of Kayla's multiple diagnoses, Boston Children's Hospital will provide a unique opportunity for a consolidated diagnosis and treatment plan to best meet her needs.
Getting into Boston Hospital was only the beginning. Kayla's health, comfort, and wellbeing are of the utmost importance, however, the financial burden her family is about to face is tremendous. Multiple cross-country trips, airfare, hotel, food, rental car, co-pays, and days off from work....it will all add up quickly.
Kayla is an inspirational young lady and this opportunity can give her the chance to improve her quality of life. We would appreciate your support in helping Kayla and her family with the additional costs so that they can focus on Kayla and her treatments.