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Hi my name is Rossella and I am the mother of Loris who is 11 years old. We live in Northern Italy with my husband and my daughter Noemi. I am writing you because I wanted to share our story. Loris was only two months old when the pediatrician helped us realize that he did not move one of his arms and decided to give him physical therapy for four months without any specific examination of the problem. When Loris turned 3, I took him to his first eye exam. The doctors immediately noticed that he had a significant farsighted sight problem and astigmatism.
Later they had him complete a physical exam because I had noticed that he did not walk very well. He was diagnosed with flat feet specifically on one of his feet. He was prescribed orthopedic shoes until he was seven years old and then wore inserts in his shoes for an additional two years. In second grade his teacher explained to me that he confused his consonants with similar sounds and had a difficult time reading. By third grade, I could see what great difficulties he was having and my husband and I decided to have his complete additional diagnostic tests for dyslexia. The results were positive for dyslexia, dyscalculia (simple math), and dysgrpahia (ability to write).
In December 2008, Loris began suffering pains in his eyes and the front part of his face. The pain increased in intensity and frequency over several months. In May 2009 after a terrible pain attack, he remained disoriented and confused and then was lethargic for three to four hours afterward. My husband and I decided together with the pediatrician to have him taken to urgent care to see a child neuropsychiatrist in Monza, Italy. The specialist observed a strange lesion on the frontal lobe of Loris' brain. There was also evidence of a problem on the left lobe with lesions on his occipital lobe as well. The specialist decided to complete a CAT scan that showed evidence of a herniated cerebral tonsil. Loris' symptoms continued to worsen and he was showing signs of having Syndrome A.
In October 2009, Loris was brought in for an additional CAT scan to confirm Syndrome A but the results, fortunately, were negative.
At this time, the doctors told us that the situation in Loris' brain was likely caused by a trauma that occurred shortly before his birth and that all of his problems were the consequences of the trauma.
November 2010, after an EKG we realized that Loris was suffering from epileptic seizures where he had a lesion and he began taking anti-seizure medicine.
February 2011, Loris continued to have strong pains in his frontal lobe associated resulting in him becoming disoriented, difficulty of speech, sight, and distorted vocal tones.
We decided to take Loris to Fatebenefratelli di Milano for a consult. He referred us to an additional neurologic clinic. In March 2011, Loris was screened for Parry Romberg disease. Shortly after meeting with the specialist his diagnosis of Parry Rombergs was confirmed. Loris is affected with a rare strain of Parry Rombergs called acute neuro Parry Romberg.
October 2011, Loris is 11 ½ years old and his illness has created cerebral damage to his brain which has drastically affected his memory and his ability to speak. The left part of his face has the standard loss of feeling and atrophy is setting in. Loris is currently taking immunoglobuline in high doses and steroid treatments.
To bring all of this up has been very difficult for me and continues to be difficult for me each day. We hope that our story is of help to others. If you want to write me, my email is: firstname.lastname@example.org. It would make me very happy to share experiences with all of you.
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