Standing on the Promises
On August 14, 2020, we were told our son had a spot on his brain. On August 15, 2020, with tear-filled eyes, the team of doctors at Vanderbilt told us our sweet boy who had been healthy as could be was going to die. We remember the words inoperable, no cure, and make memories. We remember them telling us it was four letters, but we had to ask the nurse later what the four letters were. DIPG. We had never heard of it. A diagnosis of DIPG has no hope and no cure, but we knew our hope was in the Lord. You see, as hard as it all was, we managed and still manage to keep going because our hope is not in this life. Our hope is in the promise of eternal life for those who choose to accept the gift God gives us through His Son, Jesus Christ. We are thankful for how God has used our journey and how He continues to do so. Compassion fatigue is a real thing. God gave us the perfect group of people to encourage us and pray for us. God gave us Team Landon Clay, which has grown to the Team Landon Clay Foundation.
We will work hard to continue sharing Landon’s heart and story through the Team Landon Clay Foundation. We have big goals to help others, and we pray that we honor Landon’s name and glorify God as we do. The fight against DIPG required us to step out in faith more times than we can count, which gave us the privilege of seeing God work in the most unusual and beautiful ways. We know God has called us to serve, and He will take care of us. He always has. We believe He will equip us with exactly the things and people we need to carry out such a big mission. We have the opportunity to serve others in a way that not everyone can understand. We have lived DIPG and the horror that goes with it. Giving God all of the glory, we want to use what we’ve learned to help others. We want to give others hope. We want to give others hope for a miracle, hope for a good day, hope for a cure, hope for a bigger picture, and hope for eternal life, which all are gifts when we place our hope in our Heavenly Father.
To our Landon Clay…we hope we make you proud. We hope that we see the day that no other kid has to endure what you did. You didn’t deserve the pain. We know God is rewarding you now though. We would give the world to go back and change that diagnosis. If love could’ve saved you, you wouldn’t have ever been sick. Thank you for making each of us a better person, a better friend, a better mom, a better dad, a better teacher, and more importantly, a better Christian. We still thank God every single day that we are your parents. You changed our lives from day one, and you continue to do so. We can’t bring you back, but we can come to you. We just have to finish up some important work here first.
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Waylon and Maria Matheny
Landon’s Parents
Mission Statement
To help children with critical illnesses until the day comes when no parent is told “There’s nothing we can do.”
TLCF is a 501(c)3, non-profit foundation that was founded on June 9, 2021, by the family and friends of seven-year-old Landon Clay Matheny to “help the kids” just like he did. While Landon was working through occupational therapy at home, he started his own business, “Bombs Away” making and selling bath bombs and used the profit to buy toys for St. Jude’s Happy Cart. Ten months prior to diagnosis, Landon fundraised and ran in the kid’s marathon at St. Jude in Memphis. Though he was young, Landon was a true warrior with a servant’s heart. The mission of this foundation allows us to continue what he started. Funds from the foundation are used in helping children locally with critical illnesses and nationally with DIPG, providing goodies to the Happy Cart at St. Jude in Memphis and Landon’s Toy Box Program at BMH-Union City, funding research grants, along with a Nurse Navigator Program and the work of the DIPG/DMG National Tumor Board, and other suitable needs that fall within our mission. There will be a day when all children are healed and foundations like this will no longer be needed. Our Mission is to “help the kids” like Landon would until that day comes.
Don’t be afraid, only believe. Mark 5:36
Goals
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We understand that there’s a HUGE opportunity to serve children and their families in different ways now that we’ve been helped in so many different ways over the past year. We truly feel like we understand the needs that arise when caring for a child that is critically ill in a way that not just anyone can relate.
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One of the blessings that brought me to my knees in tears was when Reed’s Seeds sent us a check and said to go have fun. When you aren’t working and your entire focus is on taking care of a child, it is so hard to spend money. Every time I spent money, there was this anxious feeling that I might need it down the road for something more important. We always had money, but we didn’t know how long we needed the money to last. That was a tough one! When you have a critically ill child, it is hard to say no, and you shouldn’t have to say no.
This $99 would fund a perfect trip to one of Landon’s favorites! Chuck E Cheese, Main Event, the Zoo! Just have fun with it, and don’t use it for the necessities. It’s money someone wouldn’t have to feel guilty about using because it almost feels like it comes with permission to spend it! Make an experience out of it! Mental health is so important. Kids and their families will struggle with all of the emotions when a child is sick. They need experiences outside of the hospital.
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Not a chance we would leave this off, as this was so important to our Landon! We are putting Logan in charge of this task. He will do a great job because he watched and helped his brother do this perfectly. Logan will do his own fundraising ideas for this one! He already has investors keeping him afloat $20 at a time!
Landon’s Toy Box was created in 2022 to help local children and teens during their overnight stays at our local hospital. We have already received many words of thanks as the bags full of gifts helped make this stay less scary.
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We have to get to a point where parents are not being told to go home and make memories. If you followed our story, you know that phrase brings out ALL of the emotions for me. It makes me angry, sad, frustrated, confused, etc. I wasn’t in a place to be able to do anything about that while caring for Landon. Landon was my priority. But now, I am a momma on a mission. We have to get money to the RIGHT places for research. I know so many people who want to help find a cure, but they don’t know how to help. We do now! We can get money where it needs to go to help find a cure! Also, kids shouldn’t be chosen as a lottery to see if they “get” to try a drug in a clinical trial. We want to help support more trials and more compassion uses of the drugs that are out there. Landon was on a compassion use of ONC 201 because he didn’t meet the criteria for the trial. We had the opportunity to try. Not everyone is awarded that opportunity. We want to help change that.
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We aren’t the only foundation. Obion County is blessed to have people helping in every corner. After much prayer, we knew we could offer what we now know to serve others. There are other foundations nationwide that are working towards a cure also. We will support any group that we feel is getting to the goal with fidelity.
Team Landon Clay Foundation Board: (L to R) Waylon Matheny, Maria Matheny (and Logan), Debbie Hutchison, Anita Matheny, and Debbie Garrett
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Waylon and Maria Matheny are Landon and Logan’s parents and founders of TLCF. Waylon is a transportation manager, where he is responsible for a fleet of big rigs, while Maria is a high school math teacher and instructional coach for her district. Together, they work through the daily operations of TLCF, which they do from Landon’s bedroom. It is there, they feel closest to him, while they work through meeting the needs of other kids and families. They read the same Bible verse every morning when they leave their room, as they feel it gives them permission to keep going.
“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.” Joshua 1:9.
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Debbie Garrett is the Coordinator of Volunteer Services and Special Events at St. Jude Children’s Research Hospital and brings a wealth of experience from working in non-profits, events, and IT to the foundation. Debbie created the TLCF website and organized the TLCF group/community and the TLCF page. Debbie housed Landon and his family while he was at St. Jude. She saw DIPG up close and personal. She saw things she can’t unsee, which makes her determined to do what she can to keep other families from experiencing the cruelty of DIPG. Working in the hospital, she is also an excellent resource for the pediatric cancer community.
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Anita Matheny is an accountant for the State of Tennessee. Her experience in accounting and finance is priceless as she serves with the foundation. She can find a solution to any problem and helps realign the percentages of the budget in each domain as the budget changes quarterly. She spent countless hours researching doctors, trials, and the journeys of other kids with DIPG, while Landon was fighting for his life, to help Landon’s family with impossible decisions. Her knowledge gained from that research and being a constant figure in Landon’s journey allows her to be an invaluable asset to TLCF.
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Debbie Hutchison, with her family, has successfully built and sustained a profitable poultry farm. Debbie’s experience building a business from the ground up has been extremely beneficial to establishing TLCF. She brings a lot of wisdom to the group, and she is the one who analyzes and executes every last detail on Celebrate Landon and has her planning expertise in on other events, too. She is the one who ensures little touches of Landon are present in all that is done. Debbie and her family’s leap of faith to start a memorial fund for Landon gave Waylon and Maria the ability to answer God’s call to start the foundation.
When Debbie speaks about TLCF, she often says, “We are turning pain into purpose.”