Steve Hughes - ALS expenses

Our Story:

Life has changed dramatically for our family since Steve's devastating ALS diagnosis. While we are enduring the daily roller coaster that accompanies ALS, we are also experiencing many new expenses for basic daily living. We appreciate any and all help during this stressful time. Prayer is first and foremost the best way to support us, so thank you to the numerous prayer chains that have been built on our behalf.

Many of our family and friends have reached out asking how to help, so our kids offered to set up this GoFundMe for us. Recently many have also asked about using Venmo. If you prefer that route instead of GoFundMe, please reach out separately to us. We are forever grateful for any help you are able to provide.

Steve's symptoms began in July 2021 when he struggled to hand turn a screw. After several months of waiting to see a neurologist, he met with a hand specialist in November 2021 who did several tests with Steve. After ruling out many common problems, the hand specialist made a note that it could be "possible ALS". That was the first we learned about ALS and our hearts sunk. We soon learned that most people only live 2-5 years with ALS and that ALS affects every part of your body.

We decided to move from Minnesota to Kentucky in April 2022 to be closer to Steve's parents and we received the official ALS confirmation diagnosis during our first clinic visit with the UK ALS Neurology team in September 2022.

Over the last three years Steve's ALS has progressed quickly. He has lost all mobility in his body and currently needs to be moved to his large motorized wheelchair with a lift system. Steve has a tracheostomy with a ventilator, oxygen, cough assist, and nebulizer machine that is used 24/7. Since he can no longer speak, he uses an eye gaze device to access his computer and to utilize the communication programs. He also uses his eye gaze to help him control his wheelchair. Steve uses his feeding tube for all of his meals and medications, and he has a catheter. He requires help for every basic need including just turning his head when he becomes uncomfortable.

Steve continued working as long as possible after being diagnosed and used technology advancements to the fullest use possible to continue working. We are thankful that we were able to get several of the larger priced equipment through Vocational Rehab after we moved to Kentucky. Unfortunately, Steve needed to go on disability in March 2024 when he could no longer work.

While Medicare and disability helps to pay for many of the medical expenses, it does not cover any caregiving expenses or any of the daily necessities such as gloves, wet wipes, and chucks. It also doesn't cover the many items we purchase through Amazon such as thermometers, oximeters, blood pressure cuffs, snap on pants and shorts, gauze pads, and the many other purchases we make on a monthly basis.

Thank you for your help, every little bit helps.

For more details and current updates, please visit our CaringBridge (https://www.caringbridge.org/visit/steve.hughes) where we keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.

Thank you for reading the background and for praying for Steve and our whole family. We are continuing to trust God through this journey and we know He is still in control. While we have good days and bad days and sometimes we just break down and cry, we are confident that God loves us and somehow this all fits into His perfect plan. We have peace in knowing that even though we don't know what our future holds, we know the One who holds the future in His hands.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7

About ALS:

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis.

ALS can strike anyone. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need.