Hebron, Conn. – This spring, Hebron resident Donna Sweeney turned 49. While this age is benign to most, it is a milestone year Donna has simultaneously feared and been excited to surpass since the age of 27. After two decades leading up to the inevitable, Sweeney has faced her longtime foe, and is tacking on a 50-mile challenge for good measure.
“This is a milestone year for me because my mother passed away at the age of 49 from complications of multiple sclerosis,” said Sweeney, a married mother of two. “Now that I have reached the same age I realize how young she truly was and how much life she had left to live.”
Donna’s mother Patricia, was diagnosed with MS, an autoimmune disease affecting the central nervous system, at the young age of 19. More than 6,000 Connecticut residents are affected by multiple sclerosis. The cause is unknown and there is currently no cure for MS. Symptoms can include numbness in the limbs, difficulties with vision and speech, stiffness, loss of mobility and, in some more severe cases, total paralysis. The progress, severity and specific symptoms of MS in any one person cannot be predicted.
Throughout Donna’s childhood, she and her younger brother had learned to fend for themselves while caring for a mother whose health varied as much as the New England weather.
“My mother was in out of the hospital several times a year due to exacerbations of the illness,” Sweeney said. “We took responsibility for caring for her directly and attended doctor’s visits and physical and occupational therapy sessions with her.”
Inspired by her mother’s fight and the many therapists who helped Patricia cling to her quickly diminishing independence, Sweeney decided to enter college and pursue a degree in occupational therapy, allowing her to help others in a similar fashion to those who helped her mother.
“During my sophomore year of college, my mother’s health deteriorated considerably,” she said. “I remember sitting by her side at the hospital contemplating dropping out of school to care for her full time, but she insisted that I return to college. Because she required constant care, she entered a nursing home.”
When Sweeney married her husband, her mother could only stay for part of the wedding day, overwhelmed by the physical demands of a celebration. In 1991, Patricia became a grandmother when granddaughter Laura was welcomed into the world. While excited to be a grandmother, Grandma Pat could not hold and coo over her first grandchild as any new grandmother would dream to do. Five months after Laura was born, Patricia lost her battle with multiple sclerosis. She never had the opportunity to meet Sweeney's second child, Molly, or her son's twin daughters.
“It has taken me 27 years to face multiple sclerosis, the villain that robbed my brother and me of a mother, our children of a grandmother, and the community of a woman who was artistic, inspirational and incredibly dedicated to her faith,” said Sweeney. “When I would ask her, ‘Why?’ she would respond with, ‘Why not? We have the strength to handle what comes our way.’ Those are the words I have chosen to live by.”
Although Sweeney’s first 27 years of life were heavily influenced by the devastating decline of her mother’s physical and cognitive functioning, the last 22 years have been nurtured by family, friends co-workers and patients, many of whom are not even aware of the impact they have made.
“I hope and pray that the collective efforts of many will provide the resources so that someday soon, all are spared from the impact of MS,” said Sweeney. “When I reflect on my life story, I know that who I am today is shaped by my mother's strength, faith and determination. She encouraged us to chart a course of independence. My daughter Laura and I are taking on this physical and emotional challenge as a way to honor my mother and all those who are afflicted by multiple sclerosis.”
Sweeney and her daughter Laura have established Team 49, together will walk 50 miles over three days: September 5, 6 and 7. They are hoping to raise $4,900 to commemorate the 49 years of Sweeney’s mother’s life.
Despite battling the unpredictable and potentially enervating effects of MS, each year thousands of people affected by MS from throughout New England accept a formidable challenge, choosing to walk to help ensure science also keeps moving forward. This walk, hosted each September in Cape Cod, Mass., is not for the faint of heart, featuring two options: a 50-mile walk over three days or a 50-kilometer walk over two days. Challenge Walk MS not only asks that participants be physically dedicated, but also requires participants to be committed to raising a minimum of $1,500.
Funds raised through National MS Society events, such as Walk MS and Challenge Walk MS, ensure ongoing scientific research to find better treatments and a cure. These funds also provide for the continuation of vital programs and services offered by the chapter to people in the state living with MS.
The 2014 Challenge Walk MS takes place Friday, Sept. 5, through Sunday, Sept. 7. Participants can opt to walk 50 miles over three days, or 50 kilometers over the course of two days. There is a $75 registration fee and $1,500 fundraising minimum.
For more information on the 2014 Challenge Walk MS on Cape Cod, contact Allison Ihm, development specialist, at 860.913.2550. For more information on Team 49 or to donate, visit www.ctfightsMS.org.
8/11/14