WASHINGTON -- A local woman shares her journey as a full-time caretaker for her mom, who has ALS, in hopes of getting people to support the cause next weekend when the annual Walk to Defeat ALS returns.
When Alexis Chinery graduated from college in 2012, she had dreams of becoming a cinematographer.
But, plans changed fast in the fall of 2015 when her mother, Susan, was diagnosed with ALS. No one saw it coming.
"It happened so quickly," said Chinery, who has embraced the challenge of being a full-time caretaker for her mom. "The first thing she noticed was weakening in her hands, then it went to her upper body and vocal cords."
In the beginning, Chinery noticed swift changes in her mother’s ability to eat, speak and move around. Her family works together help Susan stay comfortable and safe.
"Unfortunately, 'til this day she is fully dependent on my family and myself to take care of her," she said. “Family comes first.”
ALS or Lou Gehrig's disease is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It weakens muscles and in some case makes it difficult to breathe. There is no cure.
Chinery's mother has experienced those complications and now uses a breathing tube called a trach, which is placed through the hole and directly into the windpipe to help a person breathe.
Susan no longer speaks, but with the help of an eye-gazing device called Tobii, she is able to communicate.
Chinery was touched when her mother described her as an "angel heaven sent," using that device, during an interview with WUSA9.
The Chinerys are among hundreds of families across the region that receive help from the ALS Association's DMV Chapter, which provides free services for more than 700 local families.
Through education, support groups, access to care and advocacy, the organization works to defeat ALS and provide hope to people living with it and their families, according to the organization.
On Saturday, Oct. 13, the local chapter will hold its annual Walk to Defeat ALS at 2 15th St. NW by the Washington Monument.
WUSA9's Mikea Turner is hosting the walk again this year. Mikea has been on this journey with Alexis for years. The two are childhood friends. They have their own team and will be walking for a cure.
If you would like to support the cause, you can register or donate here.
Check-in starts at 9a.m.
The walk starts at 10a.m.
