WILMINGTON, NC (WECT) - Choosing to raise money for the ALS Association is a personal effort for Carolina in the Morning Anchor Kim Ratcliff.
Kim's baby brother Keith Kopka was diagnosed three and a half years ago. Keith and his wife, Megan, let Kim and a photographer in their home to give people a better idea of what it takes to care for Keith everyday.
The hope is by raising awareness and money more ALS patients will have access to the research and equipment they need just to do things like get out of bed and take a shower everyday.
Before his diagnosis Keith was an executive chef working long hours, and like many of us, trying to juggle work while being a husband and father of two.
He went from having trouble walking to not being able to drive, and now he can't get around on his own at all.
"Now, I'm kind of stuck in a chair and it's, it gets harder and harder to move," said Keith.
If Keith isn't in a wheelchair he is in a bath chair specially designed to meet his needs, but something that is not easy to find.
"I had to put myself in the position of what is that gonna look like," explained Megan. "What is it going to look like in the next couple of years when he needs to take a shower. I can't have him sitting upright in one of those typical bath chairs. Do I seatbelt him in or is there something out there."
The only other time Keith is free from his wheelchair is when he is in bed. At 5'11" and 146 lbs. of dead weight, a hoyer lift is used every time he has to be moved.
Even getting a good night's sleep is interrupted because he can't move, so Megan searched around for a special bed.
"This bed retails for $9,000. It's outside the scope of insurance and it took me forever to find because I needed other alternatives other than something that was $50,000," explained Megan. "One side will drop and hold him there for ten minutes and then it will raise him back up level out hold him again for ten minutes and then the other side will drop."
Keith gets frustrated with all the work Megan has to do. "I can't even begin to tell you how much my wife has done," he said. "It should not be this hard. But I don't have the answers."
The ALS Association Jim Catfish Hunter Chapter is the main resource for research and equipment for people with ALS in Southeastern North Carolina.
Megan Johnson is the Development Director for the ALS Association Jim "Catfish" Hunter Chapter.
"We have four ALS clinics all over the state we have five loan closets that offer free pick up and delivery of equipment we offer quarterly grants we also offer support groups for both caregivers and patients," said Johnson.
"Having other people to connect with means the world to me, sharing experiences that we've gone through or hearing other people's experiences can sometimes save you weeks, months you know just a lot of time and time is valuable in this disease," said Megan.
The average life span for an ALS patient is five years.
"We are a family on the go. We have two really active children athletes and we like to go out to all the events," said Megan.
As long as they can find what they need Keith and Megan won't let this disease stop them from enjoying whatever time they have left.
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