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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. Just about six years ago, when she still lived in Weehawken, Amanda was elected Captain of her cheerleading squad.
Amanda's ability to walk and do every day tasks became more difficult. The need to have answers about Amanda's condition was becoming more and more urgent. 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.
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.
Despite her challenges, Amanda was just like any other teenager. When she was more active, she enjoyed spending time with her girlfriends in her hometown of Kendall Park, NJ. Her activities came to much of a halt after her crisis.
Her favorite activities were shopping, surfing the internet, listening to music and spending time in the pool (when it was warm). These every day activities became much more challenging for Amanda due to her medical status. She loves 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.
Amanda was an excellent student and was well liked by all who know her! Unfortunately, she was not able to attend school in the last year of her life, but the great teachers of SBHS came to her and conducted home schooling so Amanda did not fall too far behind.
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 for 21 months before losing her battle on August 3rd, 2008.
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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