Hunt Michael Hollis was born on his due date, October 15, 2009. He was born a healthy and happy baby! However, from the beginning he had challenges eating and getting sick once he did eat. In January those episodes got worse and more frequent so we switched to Similac Alimentum, the most broken down formula you can buy, but he still got sick. Our laundry loads doubled as his sickness got worse and more frequent, thus making clean up an hourly chore.
Throughout February and March 2010 Hunt went though many GI tests at Vanderbilt Children’s Hospital including testing for cystic fibrosis, a swallow study, stomach ultrasound, colonoscopy, endoscopy, blood tests, urine tests, etc. All of the tests came back normal. Then, the GI doctors diagnosed Hunt with Failure to Thrive. Since his birth he has been measured in the less than 3 % for his height and weight.
In March and April 2010 we started seeing a doctor in the genetics department at Vanderbilt Children’s Hospital. They did lots of blood work and the doctor diagnosed him with lactic acidosis. He prescribed giving Hunt Biotin three times a day and CoQ10 three times a day. Hunt can only take four ounces of formula at a time without getting sick so we feed him every two hours. The medicine helped some, but Hunt still continued to get sick. A nutritionist at Vanderbilt taught me how to mix his formula to make it 30 calories per ounce to help him grow. He follows his own curve, but is still in the less than 3% for height and weight.
In July 2010 we called TEIS (TN early intervention services) to get him evaluated. He qualified since he was essentially ‘behind’, not crawling or eating baby food. We started to take him to food therapy at Bill Wilkerson every Monday and High Hopes every other Friday for physical therapy. His food therapist has helped him to eat baby food and he is starting to eat small bites of other food. His physical therapist, has helped him to crawl and now he is cruising and pulling up.
In October 2010 at Hunt’s one-year check up the pediatrician sent his records to other children’s hospitals to get a second opinion. We found a DNA and mitochondrial specialist in Atlanta, GA.
On February 25, 2011 we had a conference call with the specialist from Atlanta and she diagnosed Hunt with an energy disorder called “mitochondrial disease”. Mitochondrial disease or “mito” is a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function.
Children with mitochondrial disease need to eat smaller amounts more often, fatigue faster, and get sick easier than other children. We will do all that we can to keep Hunt as healthy as possible and let him be our guide to setting realistic expectations for his capabilities. We want to protect him, but also want him to have a good quality of life so I am sure we will learn this balance in time.
We are thankful to have a diagnosis so that we can understand these challenges. We hoped and prayed that this would be something he would grow out of and unfortunately this is something he will deal with for life. However, we feel positive and hopeful for him and this only makes us love him more. He is such an amazing little boy and he gives us such joy.
Throughout this process of therapies, multiple tests, and many conversations and appointments with doctors we have asked ourselves “what can we do?” Mike and I have decided that the best thing we can do for Hunt is to support him through his therapies and by being happy and healthy parents. We want to be sure that Hunt laughs every day and that he knows he is loved.
There are many children who experience challenges growing mentally and physically so we have decided that the other part of “what we can do” is to create The Hunt Michael Hollis Research Fund !
Our goal in creating the fund is to bring awareness to the need for Mitochondrial Disease Research and to support the UMDF Research Program through donations raised through The Hunt Michael Hollis Research Fund.