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Amanda Callagy was always an active, normal child. While growing up, she had some minor hand tremors and her parents thought she was a little “clumsy” at times, but she still excelled in sports, cheerleading, bike riding, etc. When Amanda was 10 years old, she was elected Captain of her cheerleading squad in Weehawken, New Jersey.
What seemed to be suddenly, Amanda's ability to walk and do every day tasks became more difficult. She started to have difficulty walking up the stairs, cheering and other things that had come so naturally before.
In 2003, Amanda moved with her Dad, Step-Mom and Brother to Kendall Park, NJ. Amanda's first day at a new school, Crossroads South, was her first day having to wear braces on her legs. She went from cheering to wearing orthotic braces in one year. Amanda continued each day and faced each challenge head on. You never heard her complain.
While we awaited a diagnosis, Amanda's condition continued to progress and she became dependent on the use of a wheelchair and the help of others with everyday tasks that the rest of us take for granted. We tried experimental drugs that made Amanda sicker but didn't help slow the disease as we had hoped. She spent her evenings at home doing exercises, wearing leg braces and attending physical therapy all in an attempt to get better, or just not get worse.
After spending time going back and forth for many doctors visits, having several wrong diagnoses, and having to endure many different tests, Amanda was diagnosed in March of 2005 through Children's Specialized Hospital in Philadelphia(CHOP) with a very rare, genetic disorder called Juvenile Sandhoff disease.
Despite her challenges, Amanda was just like any other teenager. When she was more active, she enjoyed spending time with her girlfriends at the mall, listening to music, on the computer, going out to dinner or just hanging out. Amanda loved swimming and soaking up the sun whenver she could. She was an excellent student and worked very hard to keep her grades up.
She loved Broadway Musicals, One Tree Hill, Desperate Housewives, and let’s not forget the New York Yankees! We got to New York as often as we could to see something on Broadway and to the movies more frequently.
On October 30th, 2006 Amanda faced yet one more challenge, an emergency surgery that left her in an even more dependent and medically compromised condition. Amanda came home with hospice services and was cared for in her home by her father and step-mother, her hospice workers and other family members for 21 months before losing her battle on August 3rd, 2008. Amanda was surrounded by her Dad, Step-Mom and Mother when her pain finally ended.
She was the toughest kid we know. She had a strong spirit and faced each new challenge with determination. She will always be remembered for these qualities and the love that she gave unconditionally to her family. She will be sorely missed and joyfully remembered.|
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