Help Tony Fight ALS

I often think of the plans God has in store for our family. As a woman of faith, I know that God’s plans are not ours to critique or refute. As the scripture says, God has ‘plans to give...hope and a future’. As I write this, hot tears stream down my cheeks, for I know the path God has placed before us will not be easy. 


In 2019, at only 27, my husband Tony was diagnosed with amyotrophic lateral sclerosis, also known as ALS. We remain faithful in God’s plan and know this challenge has been put before us for a reason but we cannot escape the daily pain and struggle ALS has brought to our doorstep. 


It’s the little things that get me through the day. Family hugs, story time, and watching our girls laugh and play give me strength. If I were to focus on what the doctor’s say, I don’t know that I would make it. 


We are told he only has 5 years to live, if we are lucky. We are told that his body would eventually completely stop working. That he will lose his ability to walk, talk and eventually breathe. In the sunset of his life, he will be completely immobilized and will need round the clock care and eventually life support to keep him alive. 


I will not accept that at this time. I must remain faithful and focus on our beautiful moments of happiness together. I must focus on our children, our beautiful girls Liana (4), Raelynn (2) and Gwen (6 months) and how I believe that through faith, we will get through this. 


Life before ALS was filled with joy, gratitude and love. I should clarify, our lives are STILL filled with those things but we have the added challenges of ALS which seems to permeate every part of our day. At this point, Tony is unable to get out of bed, eat, or shower without assistance. I am by his side every day, providing his personal care, making his meals and driving him to appointments. 


It’s unfair to talk about our challenges before sharing our joys. Tony and I met as teenagers and found God and our love at the same time. We are blessed to have a loving church family where Tony serves as the Youth Pastor. He was a successful personal trainer and helping others reach their personal goals was something that gave him great happiness. We also have a small family photography business where it’s been the honor of our lives to capture life’s most important moments like weddings and anniversaries. 


It’s a special feeling to be part of someone’s wedding day. When his strength began to leave him last year, he could no longer hold a camera. I’ll never forget the first wedding I shot without him. It was like half of my soul was missing, it simply wasn’t the same. I realized in that moment that we were no longer what we once were, a husband and wife wedding photographer team. 


Earlier this year, I was preparing for the inevitable. I was preparing to lose him but I was inspired by faith leaders in our community of the importance of giving to God and believing in his plan. We have now done that and my focus is on supporting Tony in battling this disease. 


Tony can no longer open a door and struggles with the most basic tasks. He cannot take our girls to the park, he cannot roll around and play with them. He cannot turn the key in our family car. At this point Tony’s mobility is extremely limited. He has about 5% mobility in one arm and the other arm is not far behind. Tony needs assistance walking and is at risk of falling even just walking to the car. He is dependent on me almost entirely. I help him get dressed, shave, shower, brush his teeth. 


As his wife, I enjoy caring for my husband. I remain hopeful that one day he will in fact be able to dance with our girls at their wedding. We have both joked in the past that God continued to give us girls so Tony could dance with them at their weddings. Tony loved to dance and I believe in my heart that one day, he will again. 


His body may be failing him but his mind and voice are not. His speech has been unaffected thus far and I believe that is because God wants him to continue to use his voice to advocate for others and continue to use his voice for the glory of God. 


Now, we ask our community to help us fight ALS. Any donation you make to our family will be used for life saving treatments and medication. His medications alone are nearly $2,000 a month (even with our private insurance) and we simply cannot afford this long term. We are also exploring alternative treatments that are not yet cleared by the FDA but are seeing success in clinical trials. Some of these treatments require frequent travel.  We’d like to try these treatments but we need the money to do so. 


100% of your donation will go to the care of my wonderfully strong and inspirational husband. Your donation will be used for medications that we can no longer afford and treatment options. We are so grateful for your prayers, sharing our story, any support you can provide us. Thank you for taking the time to read this. We will continually update this GoFundMe page to share our journey with each of you.

(**we do not own the rights to this song**
Song: Yes I will
artist: vertical worship)