Our daughter's name is Julia Rose. She is now 5 ½ years old. Her much anticipated birthday is April 23, as we cherish every year God has blessed us. Julia was born a healthy six pounds nine ounces. She never had any health issues until that dreadful day on July 21, 2006. It was a Friday morning, and we, the family, were anticipating a long summer weekend filled with pools, parks, and fun. Julia awoke and her left eye was drooping slightly. Two weeks prior she had fallen and hit her head on the corner of the coffee table right between her eyes. A week later she fell on her head again while vacationing in Pennsylvania. The typical rambunctiousness of a healthy active three-year-old.
At the time we were cautious but not overly concerned, until the morning of July 21st. We naturally assumed that those two accidents combined had resulted in something much more serious. We immediately called our pediatrician and sought an appointment for the following morning. The doctor immediately recognized something was seriously wrong and referred us to a neurological ophthalmologist, Dr. Caryn Pearlstein located in Staten Island, New York.
At this point we were thinking the head traumas might have caused some damage to her optical nerves and she would have to wear some corrective glasses. The moment the specialist saw her, she too knew this was something different and very serious. She sent us to Staten Island University Hospital where they conducted a cat scan and an MRI. By Sunday morning things had gotten somewhat better. She stopped throwing up. An eye patch was put on to help with the nausea and we were sent home.
Monday morning she began throwing up uncontrollably and her right eye began to droop. I called her pediatrician, and he had us take her for blood work initially thinking Lyme disease. Tuesday evening, we received the results, negative for Lyme disease. Our pediatrician told us to admit her to the hospital Wednesday morning for further tests.
Wednesday morning. We rushed her to Methodist hospital and she was admitted into ICU. By this time she couldn't walk and her eyes were shut. She was deteriorating by the minute, and the hospital, to their credit, immediately performed an MRI, a brain scan and a spinal tap. On Thursday evening, they had a diagnosis, and our pediatrician was on his way. Our stomachs sank, and we thought this couldn't be good.
We were told she had encephalitis brought on by the common cold virus and there was nothing they can do. Her immune system was compromised and we were to hope and pray her body could fight it off. We were devastated. After the initial diagnosis, our pediatrician suggested she be sent to Columbia Presbyterian University for further tests.
Friday morning Julia and I were transported by ambulance to Columbia. The EMT who accompanied us looked at my helpless daughter, turned, and said to me, "I don't know what's going on but you better start praying." And that we did. When we arrived at Columbia, the doctors also told us if we were religious to pray. We requested our priest Father Joseph Fonti, and he graciously came down and prayed with us.
The next few weeks were filled with anticipation, uncertainty, and desperation. Julia was subjected to numerous tests, and another diagnosis was given. Guillian Barre syndrome. At this point her body completely shut down, her eyes were closed; her body was paralyzed including her face. She was given an IVIG treatment that didn't seem to help, numerous steroid treatments and finally a plasmapharesis treatment. She was developing lesions on her brain, due, they think, to the Guillian Barre. Because of these efforts she finally started to improve very slowly.
Three months in the hospitals, two weeks in a rehab facility, finally home on October 10th. She started talking again with extensive speech therapy, started to walk again with extensive physical therapy, and occupational therapy to re-learn just about everything.
She started walking funny and losing her balance. New lesions were forming on her brain. Back to Columbia hospital for a new round of steroid treatments to shrink the lesions. Spent Christmas Eve in the hospital that year. At this point they were saying the Guillian Barre led to a neurological disorder found in children called A.D.E.M. They released us on Christmas Day. She was doing well and getting better.
Middle of March another relapse, on March 12, back to Columbia for another round of steroid treatments. At this point we were referred to Dr. Lauren Krupp, an M.S. specialist. She explained to us the relapses she keeps having are signs of MS, but it was very rare for a child this young with MS so they weren't quite sure. She was subsequently diagnosed with Chronic A.D.E.M., because of her frequent relapses not normally found in typical A.D.E.M. After the sixth relapse, on July 24, 2007, we were to administer steroids at home. Dr. Krupp also prescribed MS medication to protect her brain from the relapses that could cause serious damage to her brain.
She started out with a weekly shot of Avonex. On Fridays she would get the shot and become very ill. Staying up all night with severe flu like symptoms. After four months of this treatment it started affecting her liver and thyroid and she was switched to Copaxone, which is a daily injection. She has been on Copxone for over a year now and it seems to be working and agreeing with her. She is doing well on an everyday basis. She is in kindergarten and in dance class once a week; she plays T-ball and stays active like any other child her age. She still has her days, but she is coping, and the shots are becoming an acceptable inconvenience. Julia will be six, on April 23, so sometimes it's hard to understand how she feels because she doesn't understand herself but as a family we do the best we can.
Right now we think she is past A.D.E.M., and Chronic A.D.E.M., but there still lingers the possibility it is MS. Because she is so young, Dr. Krupp feels there is a possibility she can grow out of it. Despite Julia's illness she doesn't let it define her, nor do we.
With the love and support of family and friends, my husband Jimmy, our 8 year old daughter Brianna, and Julia are dealing with her illness and hope for the best for her future. Dr. Lauren Krupp and her medical staff have been a constant in our life. They have helped us to understand a lot more about Julia's condition. I have to specially thank Maria Millazzo for always being there when we need someone to talk to. We can't thank them enough for all they have done for us.