Pediatric Lyme Disease Foundation

Instead of my usual article, I would like you all to read a letter that I have received from a young lady with chronic Lyme disease.

Dear Governor Gridley:
My name is Julia Bruzzese, I am 12 years old. I go to St. Bernadette School in Brooklyn. I am currently in a wheelchair and cannot walk or feel my legs. I have been sick since May. I was recently blessed by the Pope and was all over the news. Before I got sick I was very active in my school community. I participated in many activities and clubs. I was also the second vice president elect of my school. I was a straight A student and have a lot of friends. In May something tragic happened, I got very sick. I visited the emergency room six times and I was in four different hospitals. I have visited numerous specialists and after three months and many negative test results I got a clinical diagnosis of Lyme disease that triggered paralysis and cardiac problems. I had to start taking pills every half hour. Some doctors told me it was all in my head. I spent my whole summer in hospitals. My two brothers and little sister gave up their summer and spent every single day in the hospital with me. My dad had to leave his work to take care of me and he lost his salary.

After getting oral antibiotics for Lyme disease, I started to feel my toes and wiggle my toes. I started to become more awake when before I couldn't stay awake for more than five minutes. I started to feel better but I still couldn't feel the rest of my legs and still couldn't walk. When September came I wasn't able to go back to school because I couldn't focus on my school work and because my school is not wheelchair accessible. My friends and principal have been by my side every step of the way. My principal, Sr. Joan, gave me and my family tickets to see the Pope at JFK airport. I wasn't expecting the Pope to come over to me to bless me, but he did! Meeting the Pope was the most precious moment of my life. I believe that he will give me a miracle to walk again. After meeting the Pope I was interviewed by many reporters.

An Albany doctor saw me on TV and offered his help for free. My family and I took him up on his offer. He would administer IV antibiotics for Lyme disease. I now have been living upstate with my father away from my siblings and my mother and my best friends who I love so much. Now we are trying to get a PICC line and medicine delivered to my home so that I can reunite with my family and friends. Because my dad is not working, we cannot afford this. We are in danger of losing our home, where I grew up. The insurance company is denying payment for my treatment. I know that I am only 12, but I believe that this experience has matured me and made me stronger than ever. I promise myself that when I walk again I will make a difference. I promise myself I will visit the sick. No child or adult should have to go through what I've been through. The country that I live in, the country that I love, please stand up for me to get better. I do not get sleep over just thinking of not walking again. I have to stay strong for my parents, my siblings, my friends, and my school. So to whoever is reading this, speaking from the bottom of my heart, please help me! I promise in a wheelchair or not, I will try to the best of my ability to make a difference! So Governor Gridley, I hope that you read this message and I am asking you to please help me.

Sincerely, Julia Bruzzese

As a side note. In speaking to Julia's mother, on May 11, 2015 Julia had an acute onset of abdominal pain that spiraled into a litany of symptoms that included; headache, stiff neck, back pain, chest pain, severe abdominal pain, hair loss, fever, migrating joint pain, numbness and tingling in a stocking like pattern of the hands and feet, sensory deficit of the lower extremities, she is unable to walk or move her legs from the hips down and has ice cold lower extremities. Julia has been wheelchair bound since the end of June, whic has caused her to develop osteoporosis, distended bladder and has developed POTS; she is also severely deconditioned.
 

Column Posted on Web Site January 17, 2016