Carter was born in November 2011. After spending 3 days in the NICU for breathing issues he came home. When he was 13 days old he stopped having bowel movements regularly. He would go 10-12 days between them. They tested him for many things and the tests were all negative. The doctor said he had severe constipation.
At 4 weeks old he would stop breathing and then gasp while he was sleeping. After a sleep study he was diagnosed with obstructive sleep apnea and central sleep apnea. He would stop breathing 44 times an hour. He was placed on an apnea monitor and had a scope done that showed he had severe reflux and laryngomalacia, which is a floppy airway. They said he would outgrow it. His parents spent many sleepless nights with him on their chests and their hands on his little back. Every time the monitor went off they would have to stimulate him to breathe.
When Carter started eating more solid foods, anything beyond the purees would cause him to choke. So much that he would turn blue and his mother would have to do the Heimlich on him. This happened frequently so he was placed in feeding therapy and eventually got to where he could eat 5-8 foods that he wouldn’t choke on. They tested him for a multitude of things but the tests always came back negative.
When Carter started crawling he would drag his left side, and when he started pulling up his leg would turn completely around. The doctors thought he had hip dysplasia, but again that was negative. What he did have was hypermobility syndrome. Carter always had low muscle tone. Even when he was a baby he would never stand up on his parent’s lap. His little ankles would touch the ground when he stood so he was put in ankle splints to help the support his ankles. He didn’t walk until he was 18 months old. At one point, they tested him for Muscular Dystrophy, but that was also negative.
In January 2015, Carter had emergency surgery for an intussusception. After that he spiked a high temp and was pretty sick. Later his parents found out he had had his first episode of lactic acidosis. 3 months later he had another episode. This time the hospital doctor was very concerned and told them to see Carter’s pediatrician immediately. The pediatrician did some more blood work and it came back concerning. He recommended seeing a Neurologist and getting a muscle biopsy. He thought it was possible Carter had Mitochondrial Disease.
In August 2015 Carter was diagnosed with Mitochondrial Myopathy, Complex IV Deficiency.
Mitochondria are responsible for 90% of the energy that our body needs to function. In a person with Mitochondrial Disease, the mitochondria are failing and cannot convert food and oxygen into life-sustaining energy, resulting in a wide range of debilitating and sometimes fatal symptoms with no two individuals being affected in the same way. There is one thing all people suffering from this disease have in common: there is no cure. In Carter’s case, the disease affected his respiratory, GI systems and muscles, resulting in weak lungs, recurrent infections, constipation, reflux, hypotonia (low muscle tone), hypermobility syndrome (very flexible joints), muscle pain, swallowing difficulty, fatigue, and lactic acidosis. Carter has been through so many obstacles in his life that no child should ever have to go through, from multiple blood work, IV’s, surgeries, x-rays, MRI’s, CT scans, scopes and many other tests. Carter’s is one case, there are many stories of Mitochondrial Disease, and many suffer more debilitating conditions, including being wheelchair-bound, suffering from strokes and seizers, and multiple organ involvement. Every case of Mitochondrial Disease presents differently.
Every 30 minutes, a child is born who will develop a Mitochondrial Disease by age 10. Many people who suffer from Mitochondrial Disease are frequently misdiagnosed due to a lack of specialists. This is why we need your support. The money raised through MitoMission will go to research towards a cure. We will be working with one or more of the organizations on the links & resources page, such as UMDF, to support research efforts.
You can follow Carter’s story on Facebook.
What is MitoMission?
We are parents to a handsome, sweet, and caring young boy that is plagued by this disease that has no cure. We have spent a significant amount of time since his diagnosis trying to figure out how we can do as much as we can for him. Now, we’re trying to do as much as we can for everyone that has Mitochondrial Disease. We’ve decided to launch MitoMission with the objective of using social media and social networks to spread awareness of Mitochondrial Disease, and raise money to support research efforts. We did not start MitoMission to compete with any of the existing Mitochondrial Disease-focused organizations, but instead to support and help them. You can reach us using the contact form located here.