Levi’s Mother, Dawnta, had been told that she had cerebral palsy most of her life. She had Levi on September 30, 2012, when she was 24 years old, while she was living in Florida. Levi was a beautiful, baby boy, who weighed 7 pounds, 5 ounces. Florida does different newborn screening and found that Levi was very sick. They said he had a very rare disorder called OTC. They put him on citrulline, which was added to his formula.
Dawnta and Levi moved to Ohio to live with her mother and stepfather. In the next three months, Levi started having seizures, and he was very hard to bottle feed. Shortly thereafter, the test from Florida came back and said that he didn’t have OTC, and he was a healthy baby. So, the doctors took him off the citrulline and things took a very bad turn. He had very little muscle control of his head/neck, and he still was refusing to eat. He dropped in weight to 11 pounds at the age of 4 months.
His pediatrician still didn’t believe he was having seizures. The family went to Nationwide Children’s in Columbus, Ohio, for seizures and failure to thrive. In March, they performed a muscle bioscopy, Nissen fundoplication, and a G-tube. The doctors decided to do an MRI of the brain, and they diagnosed him with Leigh’s Syndrome, Epilepsy, and Central Apnea.
Levi had maxed out most of the medications for seizure that he was on. He took 15 different medications twice a day. He also had infantile spasms, and he went blind around 7 months. On one trip to the ER for seizures Levi was given Ativan and it stopped his breathing. He was put on a ventilator and placed in the ICU. On July 20, 2013, he again needed to go to the ER for seizures and stopped breathing 12 times. The family thought they had lost him that night, but he was a fighter. Shortly after that, his doctor told Dawnta there was nothing else they could do for her sweet, baby boy but just love him. So she took him home and gave him the most love anyone could ever have. On the morning of August 20, 2013, Levi had another bad seizure. The family called Hospice, and his neurologist called every hour that night to check on him. Levi passed away on August 21, 2013, surrounded by his family.
Dawnta has also been diagnosed with Leigh’s Syndrome, lesions on the brain stem. Since giving birth to Levi, Dawnta’s disease progressed quickly. She has become depended upon a wheelchair and has lost most of her speech. This is why we need your support.
The United Mitochondrial Disease Foundation (UMDF) is the largest non-governmental funder of primary mitochondrial disease research in the world. Please donate to the Dawnta and Levi Kendall Family Research Fund. Bring “hope, energy, and life” to everyone affected by mitochondrial disease by donating today! Thanks for reading our story. God bless you and your family.