Our Dad was an outgoing, energetic and very active man. Whether he was biking around the city, outside fixing the deck or in the kitchen cooking, he did it with happiness and a zest for life itself. He liked to keep busy and learn something new each day and had a wealth of knowledge at his fingertips. There was always some random fun fact to share, leaving you to think, “How did you ever know that?” He was a self-taught Mr. Fix It, who eagerly shared his knowledge and skills with others.
Family was paramount in our Dad’s life. He always made the effort as well as created the time to be with the ones he loved. He shone brightly at any party – whether hosting barbecues, surprise parties or just little get-togethers on the deck. He was a happy, healthy man who very seldom became ill and even if he did, you would never hear a word of complaint. He always had a positive outlook on life, even when faced with the diagnosis and ensuing life threatening battle with scleroderma.
It took our family a long while to piece together and come to an understanding of what was happening to our Dad. At first, in late August 2010, he began to appear pale with dark circles under both eyes. He felt more tired than usual and started to sleep longer and take naps during the day. This eventually progressed on to noticeable weight loss and a change in his physical strength. He continued to work and carry on his normal activities, but the fatigue and exhaustion proved to be too much by the end of September. He, at that time, noticed some swelling in his hands and ankles, the feeling of increasingly painful ankles as well as sensations of tightness in his face, neck and throat areas.
On December 23, 2010 our Dad was examined by Dr. Peter Lee (Director of Mount Sinai Hospital’s Scleroderma Clinic) and the diagnosis of severe systemic scleroderma was confirmed. It was determined that our Dad was in his third year of scleroderma as Raynaud’s had appeared three years previously but seemed to have remained at bay since then causing minimal problems.
A very interesting fact is our Dad’s Mother had localized scleroderma. We had been informed the disease was not genetic and that it is more common in females over 30. Dr. Lee informed Dad it would be a tough battle against scleroderma, but the outlook was hopeful. Unfortunately, the disease progressed far too rapidly in a very short time. His lungs had become compromised with pulmonary fibrosis. Although he was responding well to the various medications and treatments, in less than five months after being diagnosed, we unexpectedly lost our Dad to scleroderma on May 10, 2011.
From the moment our Dad became an outpatient under the care of Dr. Lee and the Scleroderma Clinic Team at Mount Sinai Hospital, his life as well as ours seemed to become calmer. There was a plan in place that encompassed the normal as well as the urgent times, the short term as well as the long term. Our lives began to take on a much-needed routine and we began to feel safe and secure. We were no longer alone in the battle against a most horrendous disease – the Clinic had our backs 24/7. We can never speak highly enough about the Clinic, nor ever properly thank all the people for the outstanding care they provided to our Dad as well as our family. It saddened our hearts deeply to learn of the passing of Dr. Lee, but we know each one of his successors will strive to continue the tradition of providing exemplary care and support.