Fundraiser for local ALS sufferer

Nicholas, Richard, Haley, Renee, Richard, Jr and George Materi outside of the Pizza Barn Friday, September 8 for a fundraiser in Newcastle that raised $4,142 for Renee. Denice Pisciotti photo

When Renee Smith received the devastating diagnosis of Bulbar Amyotrophic Lateral Sclerosis – also known as ALS or Lou Geric’s disease – in July, her parents Mel and George Materi of Moorcroft, friends and family rallied around her. On October 7, 2017 a chili-off and auction will held in her honor at the Upton Community Center, beginning at 5 p.m.
ALS is a type of motor neuron disease that damages the motor nerve cells, which are cells required for movement. Muscles lose their bulk and get smaller. Nerve cells become scarred and damaged.
ALS causes weakness and wasting of all voluntary muscles. This means that the muscles we use to move, swallow and even breathe become affected by ALS.
The disease can start in different places in the body. However, as time progresses, the weakness worsens in the muscles that were affected first and then spreads to other parts of the body.
Unfortunately, there is no cure for ALS. There is no known way to stop or reverse the disease. There are, however, treatments that ALS specialists recommend to help people manage their symptoms.
People with ALS can live anywhere from a few months to decades depending upon disease changes and the types of medical care and assistive devices they choose. ALS is different in each person and will run an individual course.
Bulbar ALS is the destruction of motor neurons in the brain stem. In this is type of ALS, speaking and swallowing difficulty are the first symptoms noticed.
“I started having extra saliva and slurring my speech at the beginning of this year. I had called one of my doctors and we changed meds thinking that was the reason. By Easter it was prominent and everyone noticed. We went a general doc. She referred me to speech therapist. I was very fortunate to have her. She became my advocate as my speech digressed,” explains Smith.
After Neurologist Dr. Romero Mosqurea read all the MRIs, an EMG was ordered to test the nerves in her muscles.
“That was the worst test for me,” she admits.
After the results came back, Mosqurea said he thought for sure it was ALS but, to be sure, he referred Smith to Mayo Clinic. Renee and her husband, Richard chose to go to the one in Phoenix, Arizona because they have family and friends there. She was seen there on July 17 and by July 20th they confirmed the ALS diagnosis.
For her family and friends it’s hard for them to believe this is happening. Her mother George admitted she has had a wide range of emotions hit her and wishes she could trade places with her daughter to give her the wonderful years she will miss out on with her children.
“The one thing I have learned through all of this is that we truly don’t know how strong we are until we have to face our biggest fear.  I have watched Renee face this challenge with grace and love. She has spent all of her time focused on the people she loves, not on her illness. She has been and always will be an inspiration and a blessing. She optimizes all of the good things in this world. I hope that somehow I can be everything that she needs in the coming months and years. She has been a blessing from the day she was born and will continue to be long after she leaves this world for the next one,” George Materi.
Mel Materi echoed his wife’s sentiment in saying he feels helpless and is at a loss as to what to do.
“I just know that I’m here for Renee for whatever she needs,” her Dad added.
She is a wife and mother of six with her youngest son, Nicholas, just two years old. Renee and her husband Richard live in Osage with the three youngest children.
“Renee was a mom to my kids long before she was a stepmom. I wouldn’t change a thing for fear that she wouldn’t be in our lives. I’d do it all over again in a heartbeat,” her husband acknowledges.
As a graduate from the Cordon Bleu Culinary Institute, she had been working as the Certified Dietary Manager at Weston County Health Services. However, last week she had to leave the position she had been at for the past two years.
Tiredness comes easy to her these days. She is experiencing faciculation – involuntary muscle contractions – in her tongue and gradually moving to shoulder, arms and legs.
“So my plan now is to spend time with family and friends. No real bucket list cause it truly doesn’t matter now. We are planning one big family trip to Disney world so I can be there with the kids. And they will have memories as well,” she stated.
Wanting to help any way they could, even before her final diagnosis at the Mayo Clinic, Smith’s friends began fundraising efforts to help her with medical bills and take a trip with her family. First bracelets with the words “Team Renee Supporting ALS” were purchased with the idea they would be a visible sign of support for her. The first 200 were sold in two weeks. More were ordered including kid’s sizes and are available for $5.
In Upton there will be a friendly chili competition October 7. Taste and eat chili, with drinks, cornbread and desserts, with kids 10 and under eating free. Also there will be a silent auction, a live auction and music.
“We are doing this to give hope to Renee. The cook-off will hopefully provide her with quality time to spend with her family and friends. All the money raised will go to her,” states Tarah Parsons, one of the fundraising organizers.
Right now there is a wide range of donations to be auctioned off including spa baskets, household baskets, art work, Wyoming Cowboy items and kid baskets with more items expected.
“It will be a great chance for people to come out and support a member of the community and her family,” says Michelle Hepker, another fundraising organizer.

Submitted by Denice Pisciotti