Kaidon Andrew Stamper was born on October 24, 2003, only weighing 2 pounds, 6 ounces. As I watched the doctors swiftly carry his small, frail body away, little did I know what life he had in front of him. I thought we would be fighting the risks of a preemie, but I was very wrong.
Kaidon’s NICU stay was a breeze. In fact, it was the easiest hospital stay and suffered little complications. He grew slowly, as he fought his way as an average preemie. He impressed all of us, being almost 4 months early. I could not wait what he could accomplish in life. If he was this strong as a baby, what could he be capable of?
He came home amazingly at 2 months old, healthy and only needing an apnea/heart monitor. The doctors told me it was to be expected, for how early he was; it was nothing unusual, and he would outgrow it in time. But time was our worst enemy. He was getting worse and so was his apnea. By the time he was 9 months old, he’d been through beginning stages of kidney failure, showed unusual blood work, needed a feeding tube, had seizures, liver complications, and severe physical impairments. He was always so tired, fighting simple viruses that would become life threatening, infections, and many hospitalizations.
By the time he was 14 months old, the doctors thought he had Leukemia, but it turned out to be a rare immune issue. He was requiring 24/7 oxygen and was not tolerating G-tube feeds. He had lost a drastic amount of weight, received a central line, was receiving IV fluids at home, TPN, and IV meds. His tummy and intestines were a mess, and he went through many surgeries to try to fix it, but it just made the issues and pain worse. I took him to five pediatric hospitals within seven years. The doctors were at a loss. They had no idea what was wrong with my son. He was getting so tired. I was feeling helpless, and fear was taking over my heart that my son was going to die, and I wouldn’t know why.
On October 24, 2010, after celebrating his 7th birthday in the hospital, the doctors came in and sat down. They had a name to this nightmare, but the nightmare was just going to get worse. Kaidon had mitochondrial disease. Mitochondrial disease affects the mitochondria. Mitochondria are a specialized compartment that is in every cell, except red cells. The mitochondria is what gives the body energy to sustain life and grow. If the mitochondria cannot produce energy, the cell will die. When cell death occurs, multi-system organ failure begins.
When the doctors told me this, my heart shattered. I knew my son was strong, but how much could he take? I had so many haunting questions that plagued my soul. How long does he have? How will his life be from now on? The doctors could tell me only a few things. They knew he needed TPN for the rest of his life, and there was no cure.
I gave Kaidon a life that was full of laughter, love, and joy. I tried to keep him out of the hospital as best I could. I could tell he was getting tired, that the mito was slowly taking over his body. I was slowly watching my son’s life being taken away, and there was nothing I could do but love him. Kaidon was the strongest, happiest child I have ever seen. He touched so many hearts, and most of all, he gave people hope.
By 2013, Kaidon’s body was shutting down fast. The spark in his eyes was fading. The child was so tired, but he kept smiling. He gave his last ounce of energy to me to smile or giggle. It was his way of giving me hope. He always had a way of speaking to me. As a mommy’s boy, I knew pretty much what he was saying. He was saying with a sad smile, I’m tired, but it’s okay. I promised him that I would keep fighting for him to find a cure.
Kaidon received his wings on April 24, 2013, in my arms, peacefully surrounded by family. No child deserves to live a life like Kaidon’s. No mommy should be robbed of the time she could have had with her baby. I no longer see his smiling face or his beautiful laughter. Many parents go through this everyday from the evils of mitochondrial disease, and we shouldn’t have to. Mito has to stop. We must find a cure. My son may no longer be here, but his promise lives strong. We could save others. Help me redefine hope. Donate now for a cure in my son’s name. We could keep the smiles going. We can keep the heart of a child beating without fear, knowing there’s a cure.
– Beth Stamper
The UMDF was formed by families affected by mitochondrial disease. The UMDF provides support to families and funds mitochondrial disease research. Since 1996, the UMDF has funded nearly $11 million in research projects aimed at finding better treatments for mitochondrial diseases, with the ultimate goal of a cure. This research has increased the understanding of mitochondrial function, improved diagnosis and moved us closer to treatments and, ultimately, a cure for those who face this devastating disease.
Help Us and the UMDF Find a Cure Through research, the medical world will one day have the resources to help children like Kaidon. Until then, please help our family and the UMDF “redefine hope” for everyone affected by mitochondrial disease through a donation to the Kaidon Andrew Stamper Research Fund.