Anyone who believes that hope would be lost in the face of a debilitating illness must never have met Amanda Callagy.
During her three years battling the very rare Juvenile-Onset Sandhoff Disease, 16-year-old Amanda, a Weehawken native, continued to learn, make friends, and treasure the good in life until she passed away early Sunday morning, Aug. 3.
Amanda persisted in her schooling, and even as her condition worsened this year, she traveled to Florida with her family, visiting Disney and Sea World.
In 2005, a fundraiser was held to help her family renovate their home in order to improve Amanda’s ability to get around the house and her quality of life. The family built a deck so she could sit outside.
She enjoyed visiting her family and friends in Weehawken, where her father was a recently retired police sergeant.
While she lived in Weehawken as a child, her family moved to South Brunswick in 2003.
Everyone who knew Amanda speaks of her strength and fortitude, her positive attitude, and how she never once complained or asked why.
She persevered and remained optimistic even as she lost all mobility, still managing to maintain a 3.5 grade point average.
For these reasons and many more, Amanda’s loved ones will always remember her as a courageous teenage girl who touched their souls and will live on in their hearts.
She never stopped fighting
“Sadly, we lost Amanda last night at 12:07 a.m. due to complications from her disease,” states the last update from Amanda’s family on her Web site, www.amandacallagy.com. “While she fought until the very end, she does not have to fight anymore, and she no longer feels pain or sadness.”
“There are less than 20 cases of this in the entire world.”
– Barbara Dillon
Sandhoff belongs to a category of approximately 50 disorders that affect only 1 in every 5,000 people. Within that category, Sandhoff itself is much rarer.
“There are less than 20 cases of this in the entire world,” says Amanda’s grandmother, Barbara Dillon, a senior account executive for the Hudson Reporter, who has actually been in contact with a woman in Norway whose 19-year-old son has the disease.
After realizing something was wrong at the age of 10, Amanda was finally diagnosed three years later with Sandhoff Disease by the Children’s Specialized Hospital in Philadelphia in 2005.
A sports aficionado who enjoyed cheerleading and bike riding, Amanda remained active as long as she could. When everyday tasks became more difficult, she took up other pastimes, such as pottery.
Eventually, she had to rely on the use of a wheelchair, but she enjoyed spending time in the pool, taking in a Broadway musical, and watching her favorite TV shows, including “American Idol” and “One Tree Hill.”
The sports fan was also big on the New York Yankees.
In South Brunswick, she met her best friend Tara and attended high school.
“She went to school every single day in her [wheel]chair,” Dillon says, describing Amanda’s dedication to her education and to leading the fullest life possible.
After being hospitalized just before Halloween in 2006 due to complications from her condition, Amanda was unable to attend school.
But she pressed forward with her studies through home instruction in her junior year, even though it took her longer to complete her courses. Tutors came four days a week, and Amanda worked all year so she could be a senior this coming fall.
At the time she died, she was two weeks away from taking her senior portrait.
To help those who are still struggling
Amanda’s family asks that anyone who wishes to honor her memory make a donation to the National Tay Sachs & Allied Disease Organization, which offers support and information for those affected by the genetic conditions that cause illnesses like Amanda’s.
“Maybe that will help another child with this condition,” explains Dillon.
The organization also addresses issues of research and finding treatment and cures for the 50 diseases that fall in the group including Sandhoff Disease.
Services were held on Aug. 6. Amanda was laid to rest at Oaklawn Cemetery in Dayton, N.J.
Amanda is survived by her parents, Michael and Debora Callagy; her stepmother Glory; her brother Michael; her sister Gabi; as well as her Weehawken family, which includes her grandparents Mimi Barbara, Mimi Rosie and Pop; her Aunt Donna and Uncle Argenis; her cousins Emily, Sophie, and Samantha; and her best friend Tara Dempsey.
For more information on Sandhoff or to donate, visit www.ntsad.org. To learn more about Amanda, visit www.amandacallagy.com.
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