Lincoln Robert Huff was born September 16, 2013, and made his Mommy Stephanie and Daddy Jeremy the happiest parents in the world. He was a beautiful little boy, with a smile that made our hearts burst with love and joy. He seemed perfectly healthy and passed his newborn screening with flying colors, but as the months began to go by Lincoln was not gaining any weight. His pediatrician prescribed medicine for acid reflux and more weeks went by with barely any weight gain.
Lincoln had a swallow study done and it was discovered that the muscles in his throat were not strong enough for him to eat without aspirating and it was decided that he would have to receive his nutrition through an NG feeding tube. It was at this time that Lincoln began to quickly pack on the pounds. His parents were so relieved that he was finally growing, though he could no longer nurse or drink from a bottle.
Just days before Lincoln would be 5 months old he began acting very fussy and throwing up. He was prescribed an antibiotic and Tylenol for a small ear infection. Unfortunately something else was at work in our little boy. February 13th is a day that we will never forget. Lincoln began acting really strange after his middle of the night feeding, and we rushed him the ER as he began seizing. He was then life flighted to Riley Children’s Hospital where we learned that he had several strokes and brain damage. He defied all of the doctors’ predictions and awoke and looked right us and knew who we were. He was quickly getting better, but after being removed from intubation, he took a turn for the worse. He battled lactic acidosis his entire stay in the Pediatric ICU and eventually succumbed to it on February 21,2014.
Two months to the day of Lincoln’s passing we received his genetic testing results. He was diagnosed with Leigh’s Disease, specifically Combined Oxidative Phosphorylation Deficiency 12 or Leukoencephalopathy with an EARS 2 gene mutation.
We are forever changed by the life of our precious son and have dedicating our lives to honoring his memory and raising funds for research.
Thank you for your support of Lincoln’s Hope Research Fund.
– Jeremy and Stephanie Huff
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.