A new chapter of our life began on December 28, 2011, when our sweet, very healthy baby boy, Kaden 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. We were overjoyed, and excited to be his parents. We 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. 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 testing. As we waited for the return on blood work that would tell us why Kaden was showing signs of developmental 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. 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 was completed, 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 syndrome.
Kaden received the official diagnosis on October 12, 2012. Leigh syndrome is a nuerometabolic disorder that damages the central nervous system (brain, spinal cord, and optic nerves). It is caused by problems in the mitochondria, the energy centers in the body’s cells. The prognosis for Leigh syndrome is poor. Depending on the defect, individuals typically live anywhere from a few years to the mid-teens.
As of current, we have gone thru genetic testing. The genetic testing has shown Kaden has a primary diagnosis of Multiple congenital anomalies-hypotonia-seizure syndrome which is caused by a mutation in PIGN. This mutation has contributed to his secondary diagnosis of Leigh syndrome. With more generic testing being completed daily, I am sure the statics have changed. At that time and even today there isn’t a lot of information readily available. What they did know is there were only four known cases of this mutation in the world. Of those four, none of them lived past the age of three.
Kaden has a slew of other issues in addition to the lesions in the brain and seizures. He has cortical vision impairment with optic nerve damage, is immune deficient, has ulcerative colitis, eats with a feeding tube, nonverbal, unable to sit or stand, and cognitive delayed. He also has beautiful blue eyes, a smile that can light up a room, and a contagious laugh/giggle. He looks to be tall like his mom, but continues to be strong like his dad. He continues to excel and work hard. He is working at his own pace and making great strides. We pray every day, that ONE day there will be a cure for Leigh syndrome/Mitochondrial disease.