Our family recently received some tragic news and are facing a really bad hardship in our lives. Our dad was diagnosed with ALS also known as the Lou Gehrig’s disease 2 months ago. For those who do not know about the disease, Amyotrophic Lateral Sclerosis is a motor neuron disease. It affects nerve cells in the brain and spinal cord which will lead to a loss of motor function, muscle weakness, paralysis, breathing problems and eventually death. There is currently no cure for this horrific disease, however there are 2 types of medicines out there that can help the disease from progressing so fast. 1. Riluzole taken orally and 2. Edaravone administered through IV. Our dad was prescribed the oral medication but he began to experience side effects such as not being able to catch his breath, which led to severe panic attacks. Last week he had no choice but to stop that medication. The last and only option we have as a family is to talk to the ALS clinic to start the medication through IV, however, the insurance company won’t cover the expenses which happen to be $146,000 a year ! We know! Insane! We and our family are beyond shattered. Along with trying to keep our dad around as long as possible, the suffering he is going through is so heartbreaking. He is getting worse by the day and within two months of being diagnosed with this disease, he needs all the assistance and supervision he can get with his daily life activities (eating his foods, going to his dr appts, getting dressed.. etc) Accommodations around the house are in progress but there is much more to be done. To mention a few like providing our dad with a lift chair, railings for him to hold on to when showering and ramps to enter in and out of the house. Nevertheless, the reason for this fundraiser is to help our family help slow down the progession of the disease as much as possible. If we can raise the funds to allow our dad to go for medication through IV, that’s more time we can have and cherish with him. ALS patients are known to last on average 3-5 years, sometimes shorter, sometimes longer. But in only two months, the symptoms have worstened a great amount and if our dad isn’t able to take any medication to slow down the progression, our time with our dad is very minimal. If we can help our dad live another day, another month or another year longer, that’s another day, month or year we are blessed. So please!, help and support our family during this tragic time in our lives. No amount is too small! No share will be judged.! One dollar is another dollar we are thankful and another share, (whether we know you or not) is another share we are grateful!
Organized by Kristianna Markoulis & Michael Markoulis.
We love you dad, keep fighting !
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