Our sweet Carter Ryan Stride 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. My husband and I spent many sleepless nights with him on our chest and our hand on his little back. Every time the monitor went off we would have to stimulate him to breathe.
When he started eating more solid foods, anything beyond the purees would cause him to choke. So much that he would turn blue and I 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 he 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. He always had low muscle tone. Even when he was a baby he would never stand up on my 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 we 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 us to see our pediatrician immediately. Our pediatrician did some more blood work and it came back concerning. He recommended us seeing a Neurologist and getting a muscle biopsy. He thought it was possible Carter had Mitochondrial Disease.
On August 19, 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.
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.
UMDF was formed by families affected by mitochondrial disease. Like the Stride family, UMDF founders wanted to help others affected by the disorder. The Foundation provides support to families and funds research into mitochondrial disease.
Despite everything Carter has endured and continues to go through he is the sweetest, most loveable little boy ever! Always has a smile on his face, a joke to cheer you up and a hug to comfort you! Carter is doing great in Pre-k, is very sociable and loves all his friends at school! One of his favorite things to do is play with his brothers and sister!
My husband Eric and I do everything we can to make sure Carter is happy, healthy and gets to just be a kid, but we want to do more! We don’t want to see other children have to go through what Carter does.
In honor of Carter and his courageous fight against this disease, our family has established the Carter Stride Research Fund. Through the United Mitochondrial Disease Foundation (UMDF), money donated to this fund goes to research in Carter’s name. Let’s help Carter and everyone else affected win the battle against Mitochondrial Disease by funding research for a cure!
Thank you for your love, prayers and support!
Lee Ann and Eric Stride