Horace Mann - Winter 2012 - (Page 19)

celebrating 125 years: preparing great and giving lives he has epidermolysis bullosa,’” repeated Jamie Silver. She was referring to “eb,” the genetic condition that affects her son. eb is an excruciatingly painful, disfiguring and currently incurable blistering disorder that affects children from birth. children like Jackson are known as “butterfly children” because their skin is as fragile as a butterfly’s wings. Severe forms of eb cause serious, and possibly fatal, complications. “We were first tipped off to eb at the hospital when they did a routine heel prick and the band-aid tore the skin off Jackson’s left heel,” recalled alex. “He was transferred to the intensive care unit and his body began to blister and deteriorate. We went from a sense of overwhelming joy over our son’s birth, to a sense of confusion, and even despair.” and here is how the journeys of these families began to parallel one another’s. once the iannuzzis received a diagnosis they returned to their research, because, Jennifer explained, “SMS is so rare that after 21 months of obsessive internet surfing i had never heard of it. even the neurologist was able to offer nothing more than to say ‘google it’ because she had never heard of it herself.” for the Silvers, the questions that flooded in during those first days after Jackson’s birth, including how they were to care for their precious, fragile infant, also went unanswered. “We were at a world-class institution in new york and the doctors had never seen eb.” GAininG control throuGh experience, fAmily And friends The iannuzzis spent the next three years adjusting to Sydney’s diagnosis of delays and other cognitive and social-function features of SMS. They addressed issues surrounding her safety, particularly when her temperament would fluctuate suddenly, as SMS indicates. They harnessed the resources of learning materials, technology, and physical activities to give her the best possible start in life, toward as integrated a future as possible. They also paid attention to the emotional well-being of Sydney’s brothers and their nuclear family. The Silvers spent the first few months after Jackson’s birth learning the torturous process of daily bathing and bandaging. Skin, the body’s largest organ, serves as its first line of defense against trauma and infection. not so for eb children, some of whom are born with missing skin that never grows back normally, or accumulate wounds impossible to heal. every aspect of life for a child with eb is compromised by the condition. Walking, standing, eating, and even holding a crayon is impaired over time when toes and fingers fuse from continuous injury. The bleach required to treat ever-present bacterial infections makes bathing extraordinarily painful, and bandage changes can last up to several hours, with special bandages costing as much as $14,000 per month. both the iannuzzis and the Silvers initially found support from organizations focused on their issues. Jennifer iannuzzi connected with parents and researchers interested in Smith-Magnesis Syndrome (priSMS). The Silvers linked with other eb families through Debra, the Dystrophic epidermolyis bullosa research association of america. essential to both families was the love and understanding they found inside their own worlds. for the iannuzzis, Jennifer’s mom, barbara Melamed, is a hero. a Development associate in the Horace Mann School alumni House and Development office, Melamed is well-known to the entire HM community of alumni and employees as a former HM parent and through her 31 years working at the school. She commutes to her daughter’s home in connecticut each weekend to assist in the smooth running of a growing family busy with round-the-clock activities. Swimming with Sydney, chauffeuring and cheering on brothers ben and cole’s soccer games, barbara is an active advocate for the SMS research foundation. She has also redefined the role of devoted “Grandma” to become each grandchild’s best friend. Jackson’s parents approached his care with love stemming naturally from their role as parents, but also from the foundation of understanding upon which their own relationship is built. Jamie and alex met when each came to Horace Mann as seventh graders new to the school. They became friends, and soon started dating. “We dated when we were 13—as much as 13-year-olds can really date, which means mostly running up phone bills, and hanging out on the bar and bat mitzvah circuit,” said alex. The two remained friendly over their HM years. Though their paths did not always parallel—with alex, a tri-athlete, involved with after-school practices and games, and Jamie engaged in such activities as peer tutoring—the two enjoyed interlocking HM friendships. and, while each went to their prom with someone else, alex related: “We started dating toward the end of sydney iannuzzi watches runners at a 5K run fundraising event for smith-magnesis syndrome in October, 2011. Horace mann magazine Winter 2012 19 photo © Ileana Garcia Jacolow

Table of Contents for the Digital Edition of Horace Mann - Winter 2012

Horace Mann - Winter 2012
Contents
Letters
Greetings from Dr. Tom Kelly
Greetings from Melissa Parento ’90
Horace Mann School’s 125th Anniversary Observances Begin
Strategic Thinking
New Initiatives in Institutional Research and Admissions
HM's New Director of College Counseling
Timothy HO and Monica Merlo are 2011 Tina and Dave Bellet Teaching Excellence Award Winners
Langfan Oratorical Contest, 2011
Horace Mann School Graduates 178 in June, 2011
Alumni Council Corner
Bookshelf
Class Notes
Memorials
Philanthropy and You

Horace Mann - Winter 2012