“My first son, Michael, was born when I was 15 years old. I became a single mother of 2 at age 19, when Carlos (Marky’s older brother) was born. When he was born it was immediately noticeable he had no skin on his hands, feet or chest.
He was born with what we now know as Epidermolysis Bullosa Recessive Dystrophic. At the time, the doctor had no idea how to provide treatment for Carlos so he was immediately flown to a hospital in the next state over. I immediately fell into a fog. I was in a total state of disbelief, confusion and, as you could imagine, incredibly overwhelmed. The doctor tried explaining to me what the disease was, but it really didn’t sink in until I had to do his first bandage change. It is an incurable, usually fatal, skin blistering condition caused by a lack of collagen. It makes the skin incredibly fragile, leading to blistering or skin loss at the slightest friction or touch. It is progressive and incredibly painful. Up to that point Carlos’ father was both emotionally and mentally abusive, so he was no support. Thank god my family was there every step of the way.
Six months later, I found myself unexpectedly pregnant again even though I was on birth control. My mind was blown. I went and saw geneticists and specialists and they all assured me, ‘There is ZERO chance you will have another child with EB.’ Four months later my sweet Marky was born, without skin on his hands, feet and chest. I went numb inside and a cold dread filled my chest. Everything went black. How could this possibly be happening?
Again, the relationship I was in was abusive and I ended up taking my children and went off to live with my parents. A single mother of three at age 20. Two with terminal illnesses. I had no high school education and no work experience except McDonald’s. I had to decide then and there…was I going to be a statistic or a success?
It took me many years and many abusive relationships before I understood the lessons my children were teaching me, right in front of my very eyes. Our strength and successes together brought me to so many levels of success far beyond my understanding.
One fateful day, both boys were life-watched to Kansas City for tests. It was the only time in their lives I wasn’t allowed to fly with them due to the size of the plane. It was also the first time they were flown together. My husband and I drove to be at the hospital when they got there. I remember my husband coming to the door of one of the rooms telling me, ‘They’re here!’ As I was putting my shoes on I saw my husband standing there staring with a scary look on his face. Everything went out of focus and I walked into Carlos’s room as if I was watching myself from above. I walked to his bed and as I turned to my husband I sank to the floor. He was gone. I screamed and doctors came running in. They performed CPR but because of his disease it tore all the skin from his chin to his chest. Nothing could be done and my baby was gone forever. They told me his heart stopped due to complications. I later found out he was given fentanyl during the flight which may have exasperated things.
I lost Carlos on November 21, 2013, at the age of 14, which was three years beyond his prognosis. At that point in my life I had discovered my faith, been married since 2010 to a wonderful man, but I was automatically transported back in time to feeling like a young teen…unsure of everything once again.
We waited to tell Marky, after all he was his constant companion through all the pain and horror of living with this terrible disease. He woke up the next morning, looked at me and said, ‘My brother came to me in a dream last night and told me he was in heaven. He isn’t in pain anymore and he loves us.’ The pain was excruciating and many days I felt lost. I can say with certainty God, my husband, and my boys are what carried me through.
It is now 2020 as I write this. Marky is 19 and way beyond his prognosis. Here I sit, waiting for him to wake up as I’m watching my grandbaby. I know I’ll have to say goodbye to him just as I did his brother. This disease will inevitably claim him as well. As I wait for the day God will call him home, I know all I can do is pray God will get me through and I will be able to bring Marky and Carlos’s story to the world… A story of determination. A story of love. A story of strength. A story of two sons who taught their mother how to fight against depression, hopelessness and grief. A story of God using any and every circumstance to reveal himself.
While it would be so easy for me to wallow in sadness knowing I will lose yet another son to an incredibly sad and horrific disease, I am met with a son who tells me, ‘Mama, don’t be sad. Don’t worry. God’s gonna give me a new body and I’m gonna be whole.’ I am met with a 19-year-old boy who is in excruciating pain each and every day, who has known nothing but pain his whole life, but whose only real concern is how I’m doing, and if there’s someone he can help. Marky will never be able to experience even some of the most simple things a healthy child would get to do or experience in their lifetime. Things like walking, eating ‘normal’ food, waking up and hopping out of bed, brushing his teeth, changing his own clothes…….Yet I am met every day with joy, love and smiles.”
This story was submitted to Love What Matters by Melissa Jaquez. Follow her on Instagram here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more inspiring stories about children battling genetic disorders here:
‘His hands are connected at his chest.’ We were in disbelief. He must have been making a mistake.’: Mom says son born with limb difference is ‘perfect’ despite differences, ‘We believe in miracles’ for his future
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