Grant McElveen and his twin, Cade, were born on February 18, 2009. Almost immediately, it was clear that there was something wrong with Grant. He screamed most of the day and night, and only slept for 30 minutes at a time. After 4 months of age, he stopped gaining weight. At 5 months, he had a gtube placed, and eventually at 7 months of age became totally TPN dependent. On Grant’s first birthday, he only weighed 12 pounds and was extremely ill.
After seeing many different specialists, we finally ended up in Houston, TX. Dr. Koenig at the UT Mitochondrial Disease Center of Excellence was the one that said that she believes that he has a Mitochondrial Disease. We have not been able to determine the genetic link, but are hopeful that we will have that in the future.
Grant appears like a healthy, though very small 2 year old. He loves sports and doing anything outside. Unfortunately, looks can be deceiving and he is pretty ill on the inside. He suffers from Intestinal Pseudo-Obstruction, which means that his intestines almost complelety stop working for periods of time. His body is deficient in many of the enzymes needed to break down sugar. He struggles with muscle weakness and fatigue as well as many other Dysautonomic symptoms. He is tube fed and uses Oxygen.
In addition to his twin brother, Grant also has 4 other siblings: Olivia, Dylan, Delaney, and Tyler. His sister, Delaney, created a Facebook page to raise awareness and funds for Mitochondrial Disease that can be found at http://www.facebook.com/wishgrantedproject. You can read about Grant and many other children on this website.
Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1000 to 4000 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 because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers. 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 Grant Family Fund. Bring “Hope. Energy. Life” to everyone affected by mitochondrial disease, by donating today!