Niki's Fight is Our Fight

On December 16, 2021, our dear friend, Niki Marquie-Long, was diagnosed with Amyotrophic Lateral Sclerosis, better known as ALS or Lou Gehrig’s disease. She is only 53 years old.

For those unfamiliar with ALS, it is a progressive nervous system disease where muscle tissue in the body slowly dies and causes increasing paralysis over time. Ultimately, ALS patients lose the ability to swallow, breathe and move. The person's mind, however, usually remains unaffected, so they are acutely aware of most everything. Unfortunately, ALS is always fatal; patients typically live for 3 to 5 years after diagnosis. There currently is no cure for ALS.

Despite this tragic news, Niki's spirit has only strengthened. She has been and continues to be an inspiration to her family and friends in her attitude and intent to turn this horrible disease's struggles into something positive for herself and others. Niki now lives with her Dad, Merle, and her beautiful daughter, Madeline, who help Niki with her daily routines and activities. In addition, her brothers, Eddie and Andy, and their families are a huge part of this support group.

A little bit about our Niki…She loves pasta and Lay’s potato chips. Her favorite colors are green and purple. She is hilarious, thoughtful, argyle-obsessed, vivacious, outgoing, adventurous, energetic, loyal, caring, compassionate, fun-loving, fiercely strong, and family-oriented. Niki is a mother, daughter, sister, sister-in-law, aunt and niece, and she takes all of these titles very seriously. She has been a rock to her family and a dear friend to many. So now it's time to return the favor.

While most ALS patients see a slower decline over several years, Niki’s symptoms have rapidly progressed. As a result, she cannot walk, requires a wheelchair, and has minimal use of her arms and hands. Understanding the many issues that immediately arise when you're diagnosed with ALS, including medical, legal and financial matters, is challenging and overwhelming. However, extensive home modifications have already been implemented for her safety and mobility, including an accessible bathroom with a walk-in tub, ramps, and a wheelchair-accessible bedroom with a specialized bed, as these were her immediate needs. She also acquired a power wheelchair with a seat elevator through the help of the ALS foundation and Team Gleason, which has been life-changing for Niki.

Since ALS is unpredictable with its speed and severity, we are cautioned to get ahead of things and be prepared and ready. Eventual needs include a specialized wheelchair transport van, adaptive equipment to help with everyday activities and home health care. Obtaining wheelchair-accessible transportation can be difficult, and purchasing a van is costly. Without these transportation methods, she faces great difficulty with activities we may take for granted, such as going to the grocery store, accessing healthcare or visiting with family and friends.

Many people don’t realize that even having good health insurance, so many things remain uncovered regarding healthcare for ALS as it only covers bits and pieces of these costs, and much of the financial burden falls on her and those around her.

We can't stop this disease from taking the course, but through this fundraising effort, we hope to help alleviate the financial burden of living with it and take steps to improve her quality of life. Your donation will help us do precisely that and go towards purchasing a specialized wheelchair transport van, in-home health care and additional adaptive equipment to help navigate and ease the challenges ALS has brought to her everyday activities.

Each and every donation is truly appreciated. However, if you are unable to donate, simply sharing this GoFundMe can go a long way towards helping us raise the money we need.

With love and endless appreciation,

Family & Friends of Niki Marquie-Long