Darin's Drive to Life: Help to fight ALS

Since Darin received the Covid vaccine in February, he began experiencing muscle cramps and twitching throughout his body. He had two laryngospasms that rendered him unable to breathe, setting off a medical diagnosis treasure hunt. He has had countless tests, including blood count tests, antibody tests, blood tests for many similar diseases, autoimmune diseases, genetic tests, vitamin deficiency, metal levels, brain and spine MRI, CT scan, EKG, pulmonary exam, dental exams, sinus exams, and muscle conduction tests. The only blood test that came back abnormal was low vitamin D. (He is "perfectly healthy!") The muscle conduction test showed both upper and lower motor neuron misfiring and muscle death. All the other tests were normal levels or negative. By eliminating every test possible that may have similar symptoms, he has been diagnosed with ALS.

This disease is usually fatal within 1-3 years of onset. There is no known cause or cure. Most who live longer are incredibly wealthy and can afford the expenses that go along with trial drugs and experimental treatments. The only FDA-approved medicine, Riluzole, is only given in a 30-day trial and may be an out-of-pocket expense. It has been shown to slow the progression of the disease by only 3 months, but when you have a limited amount of time, you take what you can get. Several other medications show promise but are out of pocket. A new drug approved recently is not going on the market for months and has shown little to no improvement in current symptoms in most.

A product called voice banking stores Darin's voice and words. When he can only communicate with his eyes on computer technology, it will talk to others in his voice instead of a robotic voice. This is extremely important to Darin. He may lose the ability to control his body, but he doesn't want to lose his voice in this world. We will have to pay out of pocket for this. Along with that service, we will need a single-level home, a wheelchair-accessible vehicle, lifts, a specialized bed, and equipment so that his family can care for him and all his needs. Kelly will stop working to care for Darin full-time, which is both of their wishes. Darin would like for his family not to have to focus on expenses on top of his long-term care.

This disease destroys muscles, killing each one off. He will become incapable of any voluntary movement, including his breathing. Currently, he has lost 80% use of his arms and hands. He has trouble getting up, turning over, and going up the stairs in their condo. He will still have his beautiful mind and senses. He will still feel others' touch even though he won't be able to move. He will have his intelligence and wit despite not being able to talk. He will still move his eyes and communicate with them through unique technology. He will continue to hear and smell. We need to give him the ability to travel comfortably to doctors, go places he has always wanted to go, experience life with his family and have some way to communicate with his 4 kids, who still need him.

Please donate. Thank you again for being a part of our ALS fight and family.