Hi - my name is Iris and I am fundraising for husband Kevin who has recently been diagnosed with ALS. This devastating disease, with no known cure, is also known as the bankruptcy disease. It not only ravages your body, but also causes your family and caregivers to be burdened with the substantial costs of accessibility and care along the way. My heart has never been so broken watching someone so incredibly vibrant and full of life go through this disease and knowing that the moments we have to live in are today because tomorrow may never come. As you can imagine, this past year has become difficult for Kevin and our family. Living with ALS means making constant adaptations. Simple tasks are becoming progressively more challenging and eventually become impossible. Kevin’s Story Kevin is always been fun, loving ,someone who makes you laugh in any situation and active in sports. He played high school football. Rugby in college. And then went on to doing jujitsu and Full Contact fighting. He worked as an Iron Worker for many years and until he changed careers and started working with our local gas and electric company. We were married in 2002 and we have 4 beautiful kids. In September 2024 he started noticing, things were hard to open with his hand . We just assumed that maybe he was starting to get arthritis.? He had just turned 50 the year before. At the end of January 2024 he had started complaining that his arm was feeling weaker, and when he went to lift a finger it would not lift. Right away we ran to the doctor. The doctor ran some tests and sent us to a different doctor because they thought that he had a pinched nerve in his neck. After physical therapy and months going by, they finally set us up for surgery. The surgery was a bust because he was misdiagnosed. A few months after surgery the right arm started twitching. It was constant . We ran back to the doctor and he told us that it was a good thing. He told us the nerves in the arm we’re trying to wake up and it was and it meant that maybe things would start waking up and working again. I just remember being so happy and thinking.. hooray it’s working! Another few months went by and the twitching got worse. The muscle deterioration was getting worse and he was having a really hard time using his hand for anything. We decided to see our regular doctor. They had no idea what was going on so we went to a neurologist in Chicago. Again, after more tests and more images the Chicago doctor didn’t have a clue. Something was wrong and I started staying up at night googling symptoms . I bought a medical book and was researching every neuromuscular disease out there. The problem with this disease is it’s so unknown . I started getting desperate and contacted Mayo Clinic in Rochester Minnesota. Getting into a hospital like that isn’t just a .. go and make an appointment. We had to submit medical records. Fill out online questionnaires and forms when you’re finished with that there’s submitted to a team of doctors and they will go over your paperwork and then they’ll let you know if you were accepted or not. In March 2024 we were accepted in! Mayo Clinic is truly an amazing place! We were so excited to get in to see them. I just knew if anyone could figure out what was going on and fix him .. they could In April of 2024 we got the worst news of our life. They told us Kevin has ALS and there isn’t a cure for it. The disease still lets you feel, think and know what’s going on while it deteriorates the body. There is no coming back from the loss of mobility Eventually, ALS will take away Kevin’s ability to eat, talk and breathe. Kevin currently Things are happening to fast. I wish I could freeze time The right shoulder, arm, and hand are no longer functional. By the end of April 2024 He began limping on right leg . Especially when cold April 29 left arm is possibly getting weak. He Said his right arm is feeling heavy for him to lift April 29 told me he can’t grasp pillows in morning with his left hand May 28 told me loosing fine motor skills in left hand June 5th quad muscle is smaller on right side June 8th noticing slurring of words June 15. Limping really bad in cold weather. Hard time walking to car .. and getting out of car June 17 kevin had choked on food while eating about4 times this month July 1 said back hurts and feel like it’s affecting the way he swallowing. Feels worse today. Feels like getting sick. Been constant for last couple week Besides the devastating physical losses that are happening , the emotional trauma is equally as extreme. The shattered dreams for our future... The dreams of family vacations, growing old together, watching the kids grow up, seeing them walk down the aisle, - all taken away. Kevin is an extraordinary person.He has inspired so many people and has been an amazing father. He is also a fighter- and is taking this disease head on. Anyone that knows Kevin knows how stubborn he is, and also how proud and generous he is. He is not someone that would ever ask for help, yet would be the first person to help anyone else in need. So now it’s our turn to give back. If you are in a position to help Kevin please consider donating and sharing Kevin’s story with others. Awareness of ALS is critical, as research continues to be significantly underfunded worldwide, with little progress made in finding a cure, and treatment options. How will the funds be used? While the ALS society and our Health care system will provide the basic equipment needed, there are many things not covered. All funds raised will go directly towards Kevin’s health care, home care, equipment and home renovation requirements. Anything over and above what is needed for Kevin’s care will be allocated to education for his daughters Katelyn and Kylie. Equipment purchased will be paid forward to other ALS victims. More about ALS: Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease is a progressive neurodegenerative disease causing muscle weakness, paralysis, and respiratory system failure. This disease attacks cells in both the brain and spinal cord that are necessary to the body’s functional mobility. Symptoms often begin as mild twitching and cramping, weakness in the arms and legs, and difficulties swallowing or speaking. As ALS progresses, individuals experience an increasing inability to move any part of the body and often become completely dependent on a feeding tube for nutrition. There is no cure for ALS. The available treatments have only been shown to slow the progression and extend survival by a few months.
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