Hi, my name is Connie and I, along with my boys, are asking for your help. We are fundraising for my husband Kenneth (Aron) Daughtry who was diagnosed with ALS. This past year has been especially hard on Aron and our family. This devastating disease, with no known cure, not only affects your body, but leaves your mind intact as you experience every loss not only physically, but also mentally. It also carries a large substantial burden of cost associated with accessibility needs and care along the way. Living with ALS means adapting constantly. Simple tasks for Aron have become progressively more challenging and eventually become impossible. My heart has never been so broken watching someone so incredibly active and full of life go through this disease. As we wait for a cure, we will not give up on the opportunities we have today! We want to do whatever it takes to allow Aron this opportunity in hopes he can regain some independence and once again experience some of the things he used to enjoy so much. Aron’s Story Aron grew up in Yulee and assisted in the family business, Daughtry Taxidermy. Growing up he learned how to work hard but also take time to play. If they were not in the shop working, they would be in the woods hunting, on the river, or beach fishing. At the age of 22 he started his own business and has been a self-employed welder, maintaining a shop in Mayport, for over 30 years. We fell in love and married in 1997, together we built a wonderful life and were looking forward to retiring one day, spending time with our grandchildren and enjoying the outdoors. As the boys were growing up, Aron coached Little League Baseball and taught them the lessons that came with hunting and fishing. We took vacations that seem to always consist of long rides, minimum stops, and singing of the old folksong “1,000 bottles of beer on the wall” over and over and over…”. Together we coordinated the Yulee Holiday Parade and Festival for over 13 years. He worked behind the scenes bringing to life whatever crazy imaginary scenes I had in my mind. The scenes would become part of The Winter Wonderland year after year so children could have their pictures taken with Santa. You can only imagine what a sacrifice this was as the Holiday Festival fell in the prime time of hunting season. He never complained. In 2018, our lives changed like we never dreamed. My husband was diagnosed with Amyotrophic Lateral Sclerosis, otherwise known as ALS or Lou Gehrig’s disease. ALS is a neurodegenerative disease that attacks the nerve cells causing muscle weakness that leads to difficulty walking, speaking, swallowing, and breathing. As Aron’s condition has progressed, his care needs have progressed also. The disease has stolen his ability to walk, requiring him to be in a wheelchair at all times. On tough days he struggles with his speech and on these days his positivity is tested more than ever. As an avid outdoorsman, he has already seen his outdoor activities restricted by the progressive disease; he has lost the use of his right arm and his left arm is slowly fading. Whether it was losing his ability to drive, shoot a gun or simply hold a fishing pole - the decline of his ability to do these things has been an enormous physical and emotional challenge for him. Our Plan We have been seen by the best ALS doctors at Mayo and UF and continue with appointments every three months so they can monitor the progression of the disease and keep a close eye on his breathing. You can imagine how discouraging it was to hear that you are no longer eligible to participate in a trial 2 years after diagnosis. It took us the first two years to wrap our head around what was happening, and we spent most of that time in denial. As his strongest supporters and advocates, we continue to fight and refuse to let this disease define who we are. Beating the odds of a 2-5 year life expectancy, we are at our 5-year mark and are continuing to stay as positive as possible and are thankful for every new day we have been given. Through our research, we have watched fellow ALS patients travel in and out of the country to try various treatments. None had given much hope until we traveled to Utah last year and met Doctors and health experts who believed that ALS was not a disease per se, but instead an accumulation of symptoms that occur in some people. These professionals offered hope, and with a newfound focus on Aron’s symptoms, we returned and began to build a protocol to reverse the disease many doctors see as predictable. While in Utah, we were introduced to a Functional Medical Clinic in Miami, Florida that specializes in cell repair. We were so impressed that we began to follow other patients with ALS that were attending the clinic and watched as they regained functionality and strength that they have not had for years. As Aron progresses, we realize how important it is that we do something now, so we have scheduled for Aron to begin a three-week treatment in mid-August. This treatment is not covered by insurance and as with every other aspect of this disease, it too, is very expensive. During this visit, Aron will be evaluated and several tests will be performed. The team will create a plan using the test results and treatment will begin right away. We truly believe they are on the cusp of finding the answers that may eventually lead to a cure and we want to be part of the answers. However, we need help to take some of the financial pressure off, so that we can start the treatment plan focusing on Aron and not so much on the burden of the cost. How you can help Anyone that knows Aron knows how proud and generous he is. He is not someone that would ever ask for help yet would be the first person to give you the shirt off his back if you were in need. If you are able to help, please consider donating and sharing his story. Sharing is important for ALS awareness, research for the disease has continued to be underfunded worldwide with little progress toward a cure, and treatment options. Above all else, we ask for your prayers as we continue this journey. Pray that the doctors find a cure and the day will come soon when the words “you have ALS” are no longer heard. You can follow Aron's journey at https://www.facebook.com/profile.php?id=100077319709814
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