A new chapter of our life began on December 28, 2011, when our sweet, very healthy baby boy, Kaden Jarret Huddleston was born. He was, and still is, a big boy. At birth, he was 9 pounds 9 ounces, with a head full of dark hair and real chubby cheeks. His cheeks were so big, that they looked as if they would swallow his chin.
We were overjoyed and excited to be his parents. We just couldn’t wait for the fun, exciting things that we could share with him. Over time, the pediatrician became concerned, because Kaden was not meeting milestones. Needless to say, at the early age of four months, we started a journey to find out what was going on in his body. We started to see a neurologist, who also became concerned with his severe low muscle tone and sent us for a testing.
As we waited for the return on blood work that would tell us why Kaden was showing signs of development delays, he started having seizures, which put him in the hospital on July 2012. He was only seven months old. He had one seizure at home, then several more the following day. The doctors took the approach that they would let any seizure under five minutes run its course until after they had an EEG and MRI completed the following day. The next day, we watched our little man have several seizures, which started affecting his stats. With every seizure, his oxygen level dropped and the doctors had to start giving Kaden oxygen. During the EEG, he had a nine-minute seizure. After the EEG, they started giving him Ativan (anti-seizure medicine) to prep him for his MRI. He came through his MRI with no incidences. We got him from recovery back to his room, where he had a 20 minute seizure. When the seizure started, it was like watching a movie – people came out of nowhere rushing through his room. The doctors started pumping Antivan into his IV and the seizures continued, so they gave him phenobarbital, and that combination began to control the seizures. We were moved to a different floor, where he was watched closely. Kaden slept for at least 24 hours.
As Kaden slept, we met many more doctors. They said things like, ‘Kaden has a chronic illness, we will be in and out the hospital for rest of his life, his life will be harder, he will have limitations, he may not live long.” Finally, we talked to his neurologist, and he found abnormalities on both the EEG and the MRI. The MRI showed two lesions, but he wanted to confirm with a specialist. We were still in the hospital, when they started throwing out the words Leigh’s disease/syndrome.
Kaden received the official diagnosis on October 12, 2012. This is when we were told our son has a clinical diagnosis of a Mitochondrial Disease called Leigh’s. Leigh’s Syndrome is a nuerometabolic disorder that damages the central nervous system (brain, spinal cord, and optic nerves). Leigh’s disease is caused by problems in the mitochondria, the energy centers in the body’s cells.
There is so much about Leigh’s that is just not understood. Our instruction by Kaden’s doctors are, if he gets sick, runs a fever (anything over a 100.5, for a Leigh’s Child) , has a uncontrolled diarrhea, vomiting, an excessive cough, any change in behavior, we go straight to the emergency room. The thoughts that went through our head were what kid will not get sick at one point? How do you keep him healthy, to avoid him having to be in the hospital? What makes having Leigh’s scarier, is when Kaden gets sick it could trigger further deterioration of his brain. Those two lesions in his brain means that portion of his brain is gone and it’s not coming back.
Not only does Kaden have a clinically diagnosis of Leigh’s Syndrome, but he also Cortical Vision Impairment with Optic Nerve Damage, and is immune deficient. We fight every day to keep him healthy and gain strength. We give him weekly home infusions to boost his immune system and have several therapists that work with him throughout the week. All of these people work together to try to get our little man to possibly sit, hold his head up, or say mommy or daddy on his own. In turn, with the doctors and therapists, this may give us one more day.
At this point, Kaden has been clinically diagnosed with Leigh’s Syndrome and we know there is no cure. So, we wait and we hope and we pray that one day these doctors will find a cure.
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.
Grants have supported research for one to three years at institutions across the United States, Canada, Europe, and Australia. Recently, projects have included studying what mechanisms in abnormal mitochondria cause muscle dysfunction, enzyme replacement therapy and other potential treatments, as well as developing models for specific mitochondrial disorders.
Mitochondria and Mitochondrial Disease
Mitochondria produce more than 90 percent of the body’s energy. When these tiny parts of the cell can’t do their job, the body doesn’t get the energy it needs, resulting in a wide range of debilitating and sometimes fatal symptoms. Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine, we now know the disease is approaching the frequency of childhood cancers. Many people who suffer from mitochondrial disease are frequently misdiagnosed due to a lack of specialists. This is why we need your support.