- Posted January 25, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
The Dawnta & Levi Kendall story living with Leigh's Syndrome
Hi! We are Dawnta and Levi Kendall, and we live in Zanesville, Ohio. We were diagnosed with a mitochondrial disease called, Leigh’s Syndrome, lesions on the brain stem.
I’m Levi’s Mother, Dawnta. I have had been told I had cerebral palsy, most of my life. I had Levi when I was 24 years old in Florida. Levi was a beautiful baby boy 7lbs 5oz and was born September 30, 2012 at 12:36 AM. 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. We came to Ohio to live with my Mother and Step Father so they could help take care of us both. In the next 3 months, Levi started having seizures and he was very hard to bottle feed. After the 3 months the test from Florida came back and said he didn’t have the OTC and was a healthy baby. So they took him off the citrulline and things took a very bad turn. He had very little muscle control of his head/neck, still was refusing to feed and dropped in weight to 11 pounds at the age of 4 months. His Pediatrician still didn’t believe us about the seizures. We had to go to the Hospital and they sent us to Nationwide Children’s in Columbus, Ohio for seizures and failure to thrive. In March they did a muscle bioscopy, Nissen, and a g-tube. The Doctors decided to do an MRI of the brain and they diagnosed him with Leigh’s Syndrome, Epilepsy & Central Apnea. Then they tested me and I came back positive. Since giving birth to Levi the disease has progressed much faster. I ‘m in a wheel chair and have lost most of my speech. 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 went blind around 7 months. On one trip to the ER for seizures Levi was given Ativan and it stopped his breathing and was put on a ventilator and in the ICU. On July 20, 2013 he again needed to go to the ER for seizures, and stopped breathing 12 times, I thought I lost him that night but he was a fighter. Shortly after that his Doctor told me there was nothing else they could do for my sweet baby boy but just Love him. So we took him home and gave him the most Love anyone could ever have. August 20, 2013 in the morning Levi had another bad seizure, we had called Hospice and his neurologist called every hour the night to check on him. Levi passed away on August 21, 2013 surrounded by his family.
We have met so many wonderful Doctors, Nurses and EMT’s that we now call family because of mito. Levi touched so many people’s hearts. We had made the trip to Akron Children’s Hospital and were accepted into the Leigh’s study. The day Levi passed; he was to get his first dose of the study drug EPI-743. We really think it would help me because the improvements the study have shone are with speech, gait and eye sight, which I has loss mostly. The study group was for 6 months to 17 years of age which I’m too old.
This is a letter from the RN in Tampa, Florida:
Dear Levi Kendall,
This is a special story about you when you were a tiny baby and is started shortly after you were born.
By the time you read this you will have figured out that your Mom is not like other Mom’s. She can’t run and play, drive a car and sometimes it is hard to understand her when talks. I got to know her and I can tell you that she loves you very much. God did make her different than other Moms and that means that she needs help to take care of you.
God had a plan to fix it so you and your Mom could live with your Grandma Brenda Norris.
You were born in Florida and God made one of your blood tests come back abnormal. Because of this you had to come to a big hospital called Tampa General Hospital. God put very special doctors, nurses, social workers, chaplains and other to work like your guardian angels to keep you and your mom safe. We all helped you go to Ohio to live with your Grandma. You even got to fly on a plane.
I am one of those people-I wanted you to know how much we loved you and your mom. We loved your grandma too. I also wanted you to know that God loves you too! There is a special story in the bible about another baby that God made a big plan to save named Moses. When he was a grown man God used him in an important way to help a whole nation of people. He made mistakes along the way but God loved him and forgave him.
I hope that you grow up and can help other people (don’t worry about messing up; God loves you and will forgive you like he did Moses.)
Your grandma might tell you some other parts to your story, but the important part is how much love goes into keeping you and your mom safe.
Nina L. Pascoe RN
This is why we need your support. The United Mitochondrial Disease Foundation is largest non-governmental funder of primary mitochondrial disease research in the world. Please donate to the Dawnta & levi Kendall Family Fund. Bring “Hope. Energy. Life” to everyone affected by mitochondrial disease, by donating today!
Thanks for reading our story. God bless you and your family. Dawnta & Levi Kendall