Stories from Caregivers: Joel from UTAH
UT
Joel
FROM UTAH
Our daughter, Elsha, was born with Werdnig-Hoffman disease (Infantile Spinal Atrophy) a form of Muscular Dystrophy. She has never walked and lost the use of her arms about 8 years ago. She is 34 years old but only weighs about 40 pounds. She is totally dependent upon my wife and I and must be held in my wife's arms in order to eat. Even though she is very intelligent and uses the computer to play on Facebook, Twitter and other online activities, she must rely on us, her caregivers for everything else. She has made her own website and creates Christmas cards each year which she sells and then uses the money to help children in Africa, South America and here in the United States. She became interested in running when someone joked about her joining their Ragnar team about five years ago. Now she has competed in over 120 races including 5Ks, 10Ks, half marathons, marathons and three triathlons. Even though we don't push her in these events it takes a lot of effort to get her to the starting lines, placed in her jogging stroller and then wait for her at the finish lines. Even though she uses the computer her little body just can't take being online much and needs our help to write things for her and help her with her card sales. We carry her up and down the stairs to our basement on average about five times per day. As a result of her disease she can't swallow very well and needs to have us collect her spit about every 8 minutes. We are constantly moving her to prevent bed sores. I recently retired in order to help my wife take care of her. She is a delight but there is also a lot of work involved.
