Meet my amazing friend Marky Jaquez! Before you read the rest of this I need you to know that I have never met another human being with as much faith, love and passion for Jesus Christ as Marky does and he is a testimony of the strength God has put in all of us! The pain Marky endures daily is outmatched by his hope and trust in Jesus. Marky says that he knows God has a brand new body waiting for him in Heaven!
You see, Marky "the rock" Jaquez has a horrific, debilitating disease called epidermolysis bullosa otherwise known as (Baby Butterfly) because his skin is as fragile as a butterfly wing. This disease is described in being, "the worst disease that no one knows about." Marky has the very worst form of this disease. He faces this disease every day with remarkable faith and a smile on his face. The doctors determined that he would live to about 14 years old but we just celebrated his 18th Birthday!! God had much different plans for Marky than his doctors did. I sat with Marky during a daily bandage re-wrap and cleaning as he was in excruciating pain with the bleach wraps and it was devastating to watch and sit with him. When it was over he said that Jesus gives him strength to endure the pain. He is also the only person in Kansas with this disease and the care for him only comes with the attention his parents can give. He has an amazing support with his friends, family, Pastor, and community but his body needs his mothers full time care.
Mark and Melissa are amazing parents and have lost their middle child to this horrific disease. Their testimony is so strong and inspiring! Their goal is simple; it's to care for their baby boy, bring awareness to this disease so a cure can be found, and to show the devil that nothing can stand to the glory of God!
His disease has progressed to the point where he wants and needs his mother with him at all times, that requires her leaving a full time job. We are hoping to contribute funds to aid with that need. I asked Marky personally what his wish is and what would make him the most happy and he responded, "I just want my mom home everyday with me to care for me."
Please watch the video and understand the challenges this family faces daily.
Marky's favorite verse; John 14: 6 Jesus answered, "I am the way and the truth and the life. No one comes to the Father except through me."
- Harini Devulapalli
- Robert Galloway
- Kaycee Kennedy
- Desiree Harmon (drive tanks)
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