Five summers ago, Mackenzie Anderson’s father sat her and her brother down on the Foxboro family’s “bad news couch” and told them their mother had ALS and about three to five years to live.
“We all started to cry,” Mackenzie told me. “It was a horrible time.”
Mackenzie’s father had to work to support the family and Mackenzie stepped up to care for her mother, Susan Anderson, with help from caregivers. She brushed her mom’s teeth, bathed her and cleaned out her feeding tube. She did the laundry and went grocery shopping, all the while keeping up her grades at Foxborough High School.
“I couldn’t have imagined not being by her side,” Mackenzie said.
Susan died in March 2016 at age 51, less than two years after her diagnosis.
Now, Mackenzie, 21, a senior at Penn State, is channeling her heartache by helping others. She has raised money for ALS treatment and research and is working on a TEDx Talk about finding purpose in pain.
“It was so horrible to watch and for her to go through,” Mackenzie said of her mother’s battle with ALS. “She used to take dance classes. She would like to drive. It was the little things that you didn’t realize that this disease was going to take away.”
Susan’s symptoms began in March 2014. One of Susan’s pointer fingers drooped and her upper arm muscles twitched. One time, her feet went numb while she was driving. Susan went through months of testing and doctor’s appointments before getting the devastating diagnosis in August.
Mackenzie and her father suspected Susan had ALS after learning about the symptoms from the Ice Bucket Challenge, which launched that summer and has raised $220 million toward finding a cure for ALS. The challenge, which Mackenzie and her mom took part in, was inspired by Pete Frates, a former Boston College baseball captain who has been battling ALS since 2012.
Susan was a special education assistant who loved to bake. “She was everybody’s friend,” said Mackenzie. “She was truly the nicest person ever.”
Mackenzie said she couldn’t save her mother from the disease so she helped in other ways. She became a team captain for the Boston Walk to Defeat ALS, raising $60,000 for the ALS Association Massachusetts Chapter. She also raised $20,000 for Hope Loves Company, a nonprofit for children whose parents have ALS, to start a camp in Massachusetts.
Recently, Mackenzie was paired with writer Wendy Angulo to help her with her TEDx Talk through ALSO US, a program that encourages young people impacted by ALS to share their stories through art. Wendy has a friend with ALS.
“She’s a very driven young lady,” said Wendy. “She’s very committed and dedicated to get her story out and to help others who are in the same situation.”
