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Amanda’s journey takes a new direction

Foundation continues to get word out on Mito disease

Madelyn Mclaren, 6, will be the featured guest of The Amanda's Journey Foundation's Remembrance Walk on Saturday, Sept. 24, at the Crossings of Colonie Park.

Madelyn Mclaren, 6, will be the featured guest of The Amanda's Journey Foundation's Remembrance Walk on Saturday, Sept. 24, at the Crossings of Colonie Park.

— Jackie Perrotta is looking to move on from holding a remembrance walk for just her daughter Amanda and is expanding the recognition to 6-year-old Madelyn Mclaren of Troy.

The event, created in 2009 to honor Amanda Perrotta, who died Nov. 12, 2008 of mitochondrial disease, will have a new focus. Perrotta said the Amanda’s Journey Foundation wanted to keep the focus of the walk current.

“We’re taking on a spotlight family because we’re only getting further away from Amanda’s death,” Perrotta, head the not-for-profit foundation, said. “We want to concentrate on what’s here and now.”

The mission is now to get “Mitey Maddy’s” story out. Mclaren’s family found out she had the genetic disorder when it became apparent her physical development was slower than other children her age and she started becoming fatigued. She began working with Dr. Darius Adams from Albany Medical Center, the same geneticist Amanda Perrotta went to for treatments, and discovered she had a Complex Four Deficiency, which means that one piece of the respiratory electron chain has a defect.

According to a press release, Mclaren has also been diagnosed with autism, which is closely linked to mitochondrial disease. She has been doing physical therapy to help with her lack of muscle development as well as speech therapy so she is able to attend public school with the help of an aid.

Things have been moving pretty quickly for the Amanda’s Journey Foundation. In just the past year, the foundation held its first ever bowl-a-thon as well as an educational Mito-conference in June. The conference included Dr. Adams, The Double H Ranch, the Make-a-Wish foundation and several drug representatives from several corporations.

“We’re taking on a spotlight family because we’re only getting further away from Amanda’s death,” Perrotta, head the not-for-profit foundation, said. “We want to concentrate on what’s here and now.”

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