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Jill’s Last Hope - The Gift of Time

Michael Mack es la persona que organiza esta recaudación de fondos en nombre de Jill Lewis.

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My name is Hayley (Mack) Gibbon, and I’m writing this GoFundMe for my mother.

Everyone who has met my mom, Jill Mack Lewis, has had the pleasure of seeing her beautiful smile and can likely recall the sound of genuine cheer in her laughter. Jill’s laughter has been such a light in the many lives she has touched over the last 61 years. Devastatingly, around the end of 2019, her beloved laugh and voice slowly began to fade and slur. Several months of unanswered questions about why this was happening came to a suffocating halt on July 3rd, 2020, when our worst nightmare of a diagnosis came to be our new reality. That beautiful summer day was the day that Jill was diagnosed with Bulbar Onset Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease and commonly recognized from the Ice Bucket Challenge. ALS is a world of unknowns; however, two things known in this disease are:

#1: In the end, you are trapped in a body that has completely deteriorated in every aspect except one, your mind.

#2: There is no cure.

The disease is a neurological disease that causes the brain to gradually shut down every brain-to-muscle communication, causing the muscles to diminish themselves to nothing eventually.

The prognosis for people diagnosed with Bulbar onset ALS is 12-36 months from diagnosis.

In Jill’s case, the first muscles to diminish controlled her ability to speak, swallow and breath (Bulbar Onset). Today, Jill is completely unable to speak, has a feeding tube placed for nutrition due to her inability to swallow, has little muscle strength in her throat and has difficulty breathing while exerting herself. Even with the assistance of the feeding tube, my mother has lost over 30 lbs in a short amount of time and is struggling with wound care for the tube. Imagine not having the muscles to clear out that tickle in the back of your throat with a simple cough; this is Jill’s daily reality. As heartbreaking as this is, it’s just the tip of the iceberg as we notice more physical changes as ALS attacks the rest of her body. ALS has caused her to fall for no apparent reason other than muscle weakness while doing things like shopping and taking her dogs to the park, something we take for granted in our ability to do every day. Her body has lost the strength to pick herself up off the floor once she’s fallen and therefore needs assistance every time. She is walking with a limp on top of being very weak. Her hands and arms are also becoming vulnerable, and it’s now difficult to even write on a whiteboard to communicate with loved ones. There is no medical way to determine how rapidly she will continue to lose more muscle function.

If you know my mom, it goes without saying that she is the most loving, selfless woman. She is an extremely strong and positive wife/mother/sister/grandma/friend. Unfortunately, this disease is one that even the most positive and strong people are told there is no hope for. Modern-day medicine/physicians tell Jill to start putting her affairs in order and accept the inevitable because there is no hope, but these groups of people do not know my mother. They do not know what she has to live for and what a fighter she is, but WE do, and we are fighting back because of that. We say there IS hope to be found. We believe Jill’s fighting spirit has slowed her progression and kept her with us for the past 21 months she’s been diagnosed.

Jill is the mother to her son, my brother, Michael Mack and myself, Hayley (Mack) Gibbon. She has been there for both of us through every bad time in our lives, and we have been by her side during some of her most challenging times, and the utmost hard of times, this diagnosis. She has been our rock and the staple to our family for the past 30+ years. My mom and I went from years of talking on the phone Every-Single-Day, only to never have another phone conversation again, not even one year after being diagnosed with ALS.

When my mom was diagnosed, the thing that shattered her heart the most was not being around to meet her grandchildren. However, as many of you know, Jill was blessed with not one but two beautiful granddaughters this past fall, Gracie and Sutton. Nothing is more important to her than spending every second she can loving our girls to pieces! And if she’s not with her granddaughters, she’s at her favorite spot, the dog park.

This treacherous disease has made both of her favorite things challenging to do. Spending time with and holding her granddaughters has become difficult with the lack of strength in her upper body. Bringing her dogs to the park is now a chore and dangerous because of the lack of balance while holding the dogs’ leashes and fear of falling from lower body weakness. She has lost the ability to enjoy the true peace and tranquility at the dog park that she before found there every day, sometimes multiple times a day. She’s also being cheated out of the full grandmother experience.

We believe the hope I spoke about earlier in this post was found at a functional medicine clinic in Miami, FL, called BodyScience. The ultimate goal of getting this much-needed treatment is to buy as much time as possible for Jill to spend with her granddaughters. The BodyScience functional medicine clinic treats ALS patients, like Jill, by using personalized IV therapies that work at a cellular level to repair the damage done over time by toxins like heavy metals. Though proven to improve ALS patients’ quality of life, insurance does not cover this functional, experimental approach.

Jill has set up a consultation to discuss specific treatments tailored directly to her ALS on April 13th. However, we cannot afford to send her there without help from you. Our family is seeking your help to raise funds to send our mom, your friend, there to help her regain function and find protocols that she can come home with and continue following to, if not reverse, stop her progression.

With an anticipated start date of May this year, this treatment is approximately three weeks long and costs around $7,500/week. This cost does not include travel and housing. We will need much help from family and friends to achieve the best treatment plan possible. Because of this price point, we are setting a goal to reach $25,000.

No one should ever be in a situation where you have to put a price on your time left on this earth, but this is Jill’s reality.

Prayers and donations are appreciated. Both will give my beautiful mother HOPE for a future to share with her family and loved ones. Any contributions, small or large, will make an enormous difference and help in fighting this disease. Thank you so much for opening your heart and donating to this effort. Your support means the world to all of us. Please feel free to share with your friends and family.

Please pray and ask God to give my mom His healing hand.

Your support is greatly appreciated. Thank you from the bottom of our hearts!