Carol Rachko has held many titles in her 58 years; devoted daughter, trusted coworker, volunteer for charitable causes, faithful friend, amazing wife, and her most cherished-loving mother to Stephen, Hailey and “fur-baby” Nora. In each role she has given 100%, dedicating herself to helping others live their best possible life. However, on April 22, 2019 Carol was given a new title- ALS patient and with this designation comes a myriad of new challenges.
Amyotrophic lateral sclerosis (ALS) or Lou Gehrig's Disease, is a fatal disease affecting nerve cells in the brain and spinal cord and their ability to control muscles. Each ALS patient’s journey is different regarding muscles effected and speed of progression, however, the end stage remains the same. Ultimately, ALS patients become prisoners in their own bodies; unable to eat, breathe, or move on their own. Unfortunately, there are no effective treatments or cures for this horrible disease. That is why the best way to help an ALS patient is to assist the patient and their family as they make adaptations to live their best possible life with the disease.
Under optimal circumstances, living with an ALS diagnosis is challenging. To further complicate matters, Carol discovered not only did she have ALS, but after working 39 years, was not eligible for disability or Medicare due to a loophole in the law. This has directly impacted the family's ability to keep up with astronomic medical bills and plan for much needed home accessibility renovations, purchasing medical equipment and day to day care.
Carol has lost use of both arms and hands requiring assistance with activities of daily living such as eating, dressing, toileting and bathing. The family has used savings to pay medical bills and facilitate care, but recognize the long term reality of ALS. They have an immediate need for a handicapped bathroom to afford Carol and caregivers access to safely accomplish basic care. In addition, the Rachko family will require assistance to meet the growing demand for skilled care hours. Currently, the family splits time to cover Carol’s needs, but this is a band-aid approach. Eventually Carol’s children must return to work and care will be more complex requiring outside help. Without financial assistance, meeting these needs will be even more challenging.
Those who know the Rachkos are aware they champion an “open door” policy for friends, family, even strangers- always making their home welcome and accessible to all. Let’s return this sentiment and unite to make the Rachko home physically accessible to Carol as she fights to live her best possible life with ALS.
No donations are too small…everything helps us reach our goal!
Hark-ALS is a recognized 501 c 3 charitable organization. All donations are tax deductible. if you prefer to mail a check please send it to: Hark-ALS 5 Pirozzi La Hillsborough, NJ 08844. Please add Carol to the memo line.
If you would like to learn more about Hark-ALS please visit our website at www.hark-als.org. You can view our documentary Hope on the Horizon here: https://youtu.be/zgXqKfWe7fg