Herzliah and UTT students experience memorable presentation

Although I was not able to make it personally, I am hearing very good  things about a program last week which involved  Herzliah High School Secondary I and Talmud Torah Grade 5 and 6 students. They  were treated to what is being described as "an extraordinary and most memorable presentation" from 10-year old author Tommy Glatzmayer. He is working at raising awareness for a very rare medical syndrome called Cornelia de Lange. 

Tommy’s sister, Melanie, was born with this syndrome, but the family went through a very painful journey before anyone was able to give them an actual diagnosis.  During this entire half hour of listening to Tommy, the students were absolutely captivated by this family’s story of love, courage and strength.

The auditorium was filled with laughter as the students interacted with Tommy and Melanie and their two pet rats.  The students had an opportunity to view an interesting video about rats and then had a delightful time watching an actual rat race. “This program was really inspiring and touching”, states Secondary I student Hannah Kalin,. “Everyone in our audience was fascinated by this story and by their pet rats.  I think Tommy and Melanie’s positive attitude profoundly touched my classmates. They will be talking about this event for a long time.”

Seen here (left to right) in the back row: Secondary I student Matthew Mann, Meran Asefa, English Teacher and Student Advisor, Melissa Sculnick and Hannah Kain.  Front row, Melanie and Tommy Glatzmeyer, holding their two pet rats with student Ethan Kovac.

 The Glatzmayer family was invited to share their story with Herzliah students through our unique Secondary I Student Advisor program.  This program, overseen by Assistant Principal Shelley Mann, is designed to facilitate the transition from elementary school to high school and to give the students an opportunity to learn new and important skills and values.  Ms. Mann elaborates on this support program, “Our students meet regularly in small groups with their teacher as a facilitator to learn about important study and organizational skills. Much time is spent on the importance of getting along with peers and the unacceptable behaviour associated with bullying. This program reinforces these important values that we teach every day”.

When Tommy was six years old, he came home crying because his sister was being teased.  He decided he wanted to write a book.  Since June 2010, 7, 000 copies of this book have been sold and in 2013 a second book, under the same title,  Melanie and Tommy have two pet rats and one Syndrome,   was released.  Tommy was also honored with the 2012 the Queen Elizabeth II Diamond Jubilee Award for his important role in creating awareness for this very rare congenital disease.

Tommy’s explains that his sister is a wonderful person and lots of fun.  He wants people to know that people with differences should not be bullied.  Tommy's message to the students was simple yet powerful: "If you see someone different smile and say hi." 

More About Cornelia de Lange Syndrome

Cornelia de Lange Syndrome is diagnosed by clinical features. Children with this Syndrome often have long eyelashes, bushy eyebrows and synophrys (joined eyebrows). Their hairline may be lower than other family members, and they may have more body hair. These  features are often less obvious in males after puberty. Children are often shorter than others in the family. None of these features may cause a problem for the person concerned; they are just clues for a diagnosis.

Children with CdLs may have gastrointestinal tract difficulties. Most  will have learning problems, although there have been children with CdLs reported with normal or only slightly below normal intelligence. Language delay is a frequent finding. Speech can be very minimal, or even absent. Hearing loss is also associated with CdLs, varying from mild to severe. Eye problems may also be present.The jaw may be small and cleft palate is common.There can also  be problems with the upper limbs.