Andy's Battle with ALS
My name is Holly Sullivan and I'm writing this for my husband Andy. We are looking to raise donations to help with his care. Things are starting to get more expensive as this disease progresses and Andy declines, but he continues to fight strong knowing that he will ultimately lose the battle.
He was diagnosed with the terrifying disease ALS (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig’s disease on May 20th, 2019. The news was devastating. As we sat in the doctors office, the doctor informed us that the average life span for a person diagnosed with ALS is between 2-5 years from when the first symptoms start. Andy's symptoms started in 2018, which means we were already a year into this fight. The doctor then told us to get our affairs in order. Those words felt like a punch, straight to the stomach. We of course asked if there was any way there could be a mistake and the doctor said he would be happy to refer us to the Mayo Clinic for a second opinion. Unfortunately, the Mayo Clinic confirmed the original diagnosis on August 3rd, 2019. Our lives would never be the same. Immediately all the feelings of grief started in, as well as all the "what if" questions. Like what happens if Andy dies before our children; Andrew or Courtney were to get married or never being able to see his grandchildren grow up. We then began thinking about our lives, not being able to spend the rest of our lives together, retire and travel the country like we had planned. Our lives were crumbling right before our eyes. We cried, we yelled, and we asked why.
ALS is a neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It is a progressive disease, which means it gets worse over time. It affects nerves in your brain and spinal cord that control your muscles. It is painful. As your muscles get weaker, it gets harder for you to walk, talk, eat, and breathe. There is no known cure, ALS is FATAL.
Andy was born December 29th, 1977 in Atlantic, Iowa to Steven James Sullivan and Brenda Fontana (Wilbourne) and spent his early years in Greenfield, Iowa. Andy's dad, Steven was in the Army and the family spent many years being sent around the World. When Andy started second grade they moved to Colorado Springs. During the end of Andy's second grade, the family moved to Augsburg, Germany where they stayed for 3.5 years stationed on Flak Kaserne base. Andy then spent his 6th and 7th grades in Sierra Vista, Arizona stationed on Fort Huachuca. Andy spent his 8th, 9th and 10th grade years in Gretna, Nebraska. For his Junior and Senior years, Andy decided to move back to his home town of Greenfield, Iowa where he graduated in 1996. Andy enjoys meeting new people and has made a lot of friends over the years.
Andy and I were married on April 10th, 2011. We have two children, Andrew James Sullivan Jr. and Courtney Jean Loukota. We bought our small home in 2006 in Omaha, Nebraska. I have worked for Certified Transmission since 2013 and Andy has worked for FedEx Freight driving a semi truck since 2004. We created Sullivan Plowing in 2012. Andy sold his Ford Mustang to buy a snow plow and we had the dream of it one day becoming something much more. Andy was fortunate enough to learn the ropes by working with Premier Electric in Gretna pushing snow. He was then able to secure his own snow accounts. Andy became a 3rd degree Mason in October of 2010 and then in May of 2011, he became a member of the Tangier Shrine. Andy and I both became members of The Order of the Eastern Star in October of 2015. We had the honor of being installed by Andy's grandmother Mabel, who has been a member for over 50 years.
Andy had to stop working in June 2019, due to the progression of his ALS. In the fall of 2019, we began to make trips to the Mayo Clinic trying to get Andy accepted into a phase 3 stem cell trial called, Brainstorm Nurown. It is a double blind study, so we don't know if Andy will be receiving the placebo or the stem cells. Once the study is complete, they will try to get it approved by the FDA. After a few months, we got the great news that they had accepted him, and informed us that Andy was 198 out of only 200 people across the whole country being accepted. Wow, that was amazing. The process would be grueling including painful lumbar punctures, multiple trips to Rochester, MN and a lot of missed time from work for me. We have to rent a handicap van since we don't have one. These trips usually last for 4 - 7 days depending on what day of the week his appointment lands on.
Andy has progressed to the point now that he requires help with simple daily activities such as dressing, brushing his teeth and bathing. He is reliant on his motorized wheelchair to get around outside of the house. He uses a bi-pap machine when he sleeps in his specialized electric recliner because he is unable to lay flat due to breathing and pain issues. He takes a lot of different medications to combat the pain he is experiencing with this disease. He suffers from edema in his legs due to lack of movement. He has to use aides on his utensils to assist him in eating and is unable to open a bottle of water by himself. His speech has become somewhat slowed and slurred. He tires easily and standing for more than a minute or two leads to painful back cramps. One of the side effects of the medication has even caused his vision to become somewhat blurry.
We are looking to raise donations to help with medical expenses that insurance won't cover, modification to our small home to make it handicap accessible, home health care, transportation costs and any of the other unknown expenses we haven't seen yet. There are so many unknowns with this disease as every case is different. Each person declines at a different rate and will experience different needs. We want everyone to know how much we appreciate your continued thoughts and prayers as we try to find our path through these tough times. We are especially grateful for any donation you are able to contribute to Andy's fight. Thank you!
Here is a video of Andy in 2014 when he participated in the Ice Bucket Challenge for ALS. Never would we have thought that just 5 years later he would be diagnosed with it. 
