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.
continued 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.”