Help us raise money to find a cure for ALS!
|Date:||Saturday, June 1, 2019|
April 12th, 2017. The day we finally got clarity on why my dad started tripping and falling while doing his weekly jogs through the Caledonia trails and started walking differently. It all started for him last summer, but my family didn't notice until we went to cut down our Christmas tree in December, when he stumbled getting down from the hayride, and another guy offered to put our tree on top of our car for us because of noticing his struggles. That's when he told us about the difficulties he's been having, and that's when we pushed him to see a doctor. We were initially told it was a muscle problem, specifically a disease called Polymyositis, an uncommon inflammatory disease causing muscle weakness on both sides of the body. He had to have two muscle biopsies done, one on each leg, in order for doctors to confirm this. When the results came, the rheumatoid doctor thought it was a neurological problem, but the neurologist disagreed and thought it was still a muscle problem. So, with no answers, we were referred to John Hopkins Outpatient Center, a brilliant research and teaching facility in Baltimore, Maryland. During his February appointment, we saw a neuromuscular doctor, Dr. Sumner, who performed several physical tests and examinations, EKG tests, and ordered for an MRI to be done. MRI came back normal. We were sent home so the entire panel team could review the results and figure out my dad's case. April 12th, 2017 was the day we went back down to John Hopkins to see wonderful Dr. Sumner... the day my world flipped upside down. Already having guessed the terrible result and trying to prepare myself to be strong, she explained how the results showed my dad's motor neurons that were supposed to reach from the brain and from the spinal cord to the muscles were deteriorating. She confirmed that my dad has ALS, amyotrophic laterals sclerosis, also known as Lou Gehrig's disease. ALS is a progressive degeneration of the motor neurons... No known cause... No cure... You progress through the disease, sometimes slower or faster than others, and lose the ability to control your muscles, to walk, to eat on your own, to talk, and eventually to breathe, causing death. I couldn't breathe or think as they discussed different trials my dad would go through on a new drug they were testing to hopefully stop motor neurons from dying, the support groups they suggested, the handicap sticker for our car, two medications to help with muscle stiffness, and even a service dog to aid my dad. Despite all of us crying during the initial shock, we were told it is important to have a positive attitude and not emotionally shut down, or else his disease would progress faster. A few years ago, my family participated in the Ice Bucket challenge, and my ignorant-self didn't even know what ALS was... and now it is affecting my entire family. ALS is a family disease. I want everyone to be aware of what ALS is, what the symptoms are, and fight for a cure. My dad is the strongest, most selfless and hardworking person I know, and he doesn't deserve this. He's my hero. He is keeping a positive attitude, wanting to have the best quality of short-term life he has, and even said he was going to "kick ALS in the nuts!" He's a fighter, and we're fighting with him, but I want everyone to be aware of what ALS is and know that there's a face to the Ice Bucket Challenge.
Thank youfor helping us reach our fundraising goal! Together we can make a difference inthe lives of those affected by ALS. Our team is committed to raising money tosupport people in our community with ALS and spread awareness of the urgency tofind treatments and a cure. Please consider joining our team in the Walk toDefeat ALS® or choose a team member from the list and donate to our cause.
WHY WE NEED YOUR HELP
Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
That’s why we’re participating in the Walk to Defeat ALS. To bring hope. To raise awareness. To provide resources and services to families free of charge. To help unlock the mystery of ALS and find the key to treatments a cure. Will you join us?
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis.
ALS can strike anyone. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need. Join the movement to provide help and hope today!