Community comes together

    On Aug. 3, we lost our beautiful Amanda. While trying to adjust to our loss, we wanted to thank so many who helped us.
   We moved to Kendall Park from Weehawken in August 2003 and, in February 2004, Amanda was diagnosed with Juvenille Sandhoff Disease, a progressive and ultimately terminal illness.
   In October 2006, Amanda suffered a medical crisis that resulted in her coming home with hospice. Almost two years later, at 16 years of age, her journey came to an end.
   During this time, we were able to truly see our community pull together on behalf of an amazing young woman and our family. The South Brunswick school district has been wonderful from the beginning. Amanda’s needs at school changed on a regular basis, and the district rose to each occasion. From allowing us to have Amanda pre-screen travel aides, allowing us to analyze every menu and request specific meal preparation to suit Amanda’s needs, to making accommodations in and between every class so that Amanda could continue to participate; including meetings to prepare teachers and specialists along the way.
   Even this past school year, when Amanda was not necessarily able to handle school, South Brunswick Special Services made accommodation after accommodation to allow Amanda to try to return to school. While she only attended for a short time before she realized that it was too much, the belief in her and in support of her academic and social goals was endless.
   Even this summer, her home instructor took the time to learn about Amanda and created projects that brought out her intelligence, her interests and her creativity.
   Amanda was one of the children helped by the Dardani Haunted Trail for the past three years. In addition to all of the hard work that was done, Tom, Carolyn, Vicki and others helped Amanda to celebrate her birthday each year at the trail with a cake. In 2007, a motorcycle run was held on Halloween in support of Amanda’s fight. This included the help of so many local employers, friends and neighbors.
   Over the years, we received support from so many, community groups, individual families and the schools Amanda attended. In 2006, the Unplugged Club at SBHS sold hundreds of the “Never Lose Hope — ABC” bracelets that Amanda and her brother Michael designed. Thanks to the Kendall Park Fire Department and the Ladies Auxillary (and Desiree and her brother) for building ramps in our home so that Amanda could have access. To our neighbors, who always offered to help and made Amanda comfortable in her community. She could leave our home and ride around the block without ever feeling like she stood out. You stopped to say hello and kept her feeling connected.
   Thanks to North Brunswick Pediatrics for doing what was needed to ensure Amanda’s comfort. To the VNA of Central Jersey – Hospice Division, we would have never made it through these past 21 months without it. They were her friends, her caregivers, and became her family. We will forever be grateful.
   Marcie Kaminker, from seventh grade through this past year, you monitored, treated and cared for and about Amanda and our family. Kathy, at Horizon BC/BS, advocated for Amanda on every occasion to meet her medical and equipment needs. She was quick, efficient and compassionate. Thank you for taking the time to just listen and help us through. Tara gave true meaning to the word friend, standing by Amanda through it all. Christa, Charleen and Francesca, thank you for caring for, and being friends to Amanda. To our friends and family who were there for us over the years and now, and to those we have not mentioned here, we are truly grateful.
Mike, Glori, Michael and Gabriella Callagy
Kendall Park