Carter James Lackey was born on July 29, 2014. He was the most beautiful boy we had ever seen, he passed all his newborn screening perfectly and we were told we had a healthy baby boy.
We started to notice that Carter wasn’t meeting any of his milestones. When i took him to his 3 month well visit, his pediatrician was very worried about him. He wasn’t able to smile, he really didn’t coo, he had very poor head control, very low muscle tone, and his eyes wandered. She referred Carter to many specialists and therapists.
The neurologist, did a very quick examination, turned to us and said “I think you have a perfectly healthy baby, who is just developing slower than normal.” We left that hospital with such relieved hearts, thinking everything was going to be okay.
Then it came time for his 6 month check-up. We were in the room for a couple minutes and knew something was VERY wrong. The doctor looked at us and said, “You have a very sick little boy, he is severely dehydrated and failure to thrive. You need to get him over to the ER right away.”
At the ER, we were told he needed to be lifeflighted to a childrens hospital, 2 hours away, which also meant leaving our two year old daughter home while we tended to Carter. When we got to the hospital, it ended up being a 2 week stay with unending amounts of testing. We were told that Carter had stopped sucking and swallowing, so when I thought he was nursing, he really wasn’t. That is when we first heard of the possible diagnosis of “Mitochondrial Disease, specifically Leigh’s Disease.”
We were sent home with a NG feeding tube and told to stay away from germs at all costs. We continued on with all the therapies, and Carter not only started to do really with them, but also was gaining weight, smiling and giggling. We had so much hope.
A month later, he had some sores under his tongue, fever and some constipation. We took him in to be seen and when they checked his oxygen, the level kept dipping down. After being sent to the childrens hospital, the next day he was rushed down to PICU and put on the ventilator and sedated. From there it was 3 weeks of ups and downs and a couple surgeries.
At 7:15 am, on April 29th, 2014, Carter was exactly 9 months old as he left our arms to received his ultimate healing and went to be with our heavenly father.
Carter touched more peoples lives in his short 9 months, than most people have their whole life. He had a smile that was so contagious, and the most beautiful one at that. He smiled, even on those dark days when we had no hope. He taught us to more about faith, strength and love than anything else. He was a fighter, he never gave up. We want to continue to carry on his memory, to help others and touch them with Carter’s testimony.
For Carter’s full story: http://carterstestimony.wordpress.com/
Help Us and the UMDF Find a Cure
The United Mitochondrial Disease Foundation (UMDF) was formed by families affected by mitochondrial disease. The UMDF provides support to families and funds mitochondrial disease research. Since 1996, the UMDF has funded nearly $11 million in research projects aimed at finding better treatments for mitochondrial diseases, with the ultimate goal of a cure. This research has increased the understanding of mitochondrial function, improved diagnosis and moved us closer to treatments and, ultimately, a cure for those who face this devastating disease.
Grants have supported research for one to three years at institutions across the United States, Canada, Europe, and Australia. Recently, projects have included studying what mechanisms in abnormal mitochondria cause muscle dysfunction, enzyme replacement therapy and other potential treatments, as well as developing models for specific mitochondrial disorders.
Mitochondria produce more than 90 percent of the body’s energy. When these tiny parts of the cell can’t do their job, the body doesn’t get the energy it needs, resulting in a wide range of debilitating and sometimes fatal symptoms. Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine, we now know the disease is approaching the frequency of childhood cancers. Many people who suffer from mitochondrial disease are frequently misdiagnosed due to a lack of specialists. This is why we need your support.