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.”
The foundation was even invited to attend a national symposium put on by the United Mitochondrial Disease Foundation out in Chicago. This was a huge chance for the Perrotta family to get Amanda’s story out to a larger audience by selling “Amanda’s Journey,” a book that contains journal entries written by Amanda about her experiences with the disease and her wishes.
“We educated people and sold books,” Perrotta said. “We got the story out to a lot of people out there in this area who didn’t know about the genetics. … We were the only foundation invited.”
Perrotta said Amanda often felt alone because there was not too much known about the disease, and there were very few families to relate with. So the family started the foundation and these events to better inform the public and reach out to others that share the same feelings.
“We couldn’t turn to anyone with questions,” Perrotta said. “Amanda felt all alone. So this foundation and these events are good networking for families.”
The funding raised from the events goes toward assisting families and children with mitochondrial disease, where many of the special formulas needed to treat the disease are not covered by insurance. There is also a push to raise enough money to help fund a service dog for some of the patients.
The foundation decided about six months ago to change the format of its remembrance walk and focus on a spotlight family, Perrotta said. It is hard to move on, but it is something Perrotta said will be very beneficial for other families.
“It’s bittersweet because it was something I wish we had while Amanda was here,” she said. “It makes my heart smile because we’re doing something I know we could have used and many other families could have used at the time.”
The event will be held on Saturday, Sept. 24, at the Crossings of Colonie Park from 10 a.m. to 2 p.m. There will be several vendors there, including hair extensions provided by an employee from Rumors, and various different food and music. Perotta said Mclaren may even play the drums for everyone.
“It’s just a good family event,” Perrotta said. “I think it will be a good day.”
