Andrew Ragan was diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease, in 2006, a debilitating and terminal condition that progressively inhibits and restricts motor functions throughout the body. While the average life expectancy for an individual with ALS is only two years, Andrew is in his sixth year with the disease. But though his voice has failed him (a common symptom of ALS), that hasn’t stopped Andrew from giving public speeches about ALS to raise awareness.
“This pink box is my portal to the world,” said Andrew of the Eyegaze computer system attached to his chair. “The computer reads my eyes and acts as a wireless mouse. My blinking is the same as you clicking your fingers on the mouse,” he explained.
It’s with this piece of technology, along with the help and support of his wife, Kelly, and his sons Briggs, 10, and Quinn, 8, that Andrew has decided to take on the challenges of ALS head-on.
“With ALS, there’s just not a lot of awareness,” said Kelly. “You lose your ability to speak, so it’s challenging to express yourself out there.”
But Andrew has found a way. Since 2007, Andrew has given multiple speeches across the Capital Region about the challenges of ALS with the help of his computer system. He’s spoken to groups at the ALS center at St. Peter’s in Albany, during a Muscular Dystrophy Association telethon and, most recently, during an interview with a local news channel.
“One thing that was really frustrating for us when we learned about ALS is that there’s no cure, there’s no medication, and within less than a year we were disqualified from any clinical trials because of respiratory complications with ALS,” said Kelly. “They told us his life expectancy was two years at best when we first got the diagnosis, so basically, we were preparing for death. Now, we’re living with ALS rather than dying from ALS.”
Living with ALS is challenging emotionally, physically and financially. For his Eyegaze computer system – his “portal to the world,” – the average cost is $20,000. For his wheelchair, the cost is closer to $40,000. Then there are the specialized beds, the lifts, retrofitting the bathrooms, bedrooms and more to allow Andrew to access his Saratoga Springs home. While the Ragans had invested in a “Cadillac insurance policy,” before his illness, the plan would not cover a large majority of the costs for such equipment. Only through the kindness of family, friends, Andrew’s former employer, Victrix, and with loaners from the ALS center at St. Peter’s has the family been able to get the equipment they need and avoid over $200,000 in costs.
The system is tiresome and difficult to navigate, something the Ragans hope to draw attention to and stimulate reform for the thousands of patients already struggling with the disease.
“Estimates are that 30,000 Americans are dealing with ALS annually,” said Andrew. “Statistically, every 90 seconds someone hears this diagnosis, and somebody dies [from the disease].”
Speaking up and out against ALS is important to all members of the Ragan household, who are also actively involved with the ALS Guardian Angels and have started their own organization, Friends of Andrew Ragan. But just as important to Andrew – if not more so – is making sure he can pass on his own advice, wisdom and life lessons to his sons.
“Andrew’s writing this amazing book to them called ‘Father’s Whispers,’” said Kelly. “It’s going to be filled with the things he might not have the opportunity to teach to them or instill in them – his thoughts and feelings on things they might not have known.”
“Subjects like love and happiness, favorite sports and parenting advice,” added Andrew.
“At this age, they might not understand it, but they will someday,” said Kelly.
To learn more about Andrew Ragan or to support his fight against ALS, visit Friends of Andrew Ragan at www.friendsofandrewragan.org.
To learn more about ALS, available resources or ways to help, visit the St. Peter’s Hospital
ALS Center website at www.sphcs.org/ALSRegionalCenter.
