Who is HankStrong?
HankStrong, also known as Hope for Hank, is a Southern Indiana group that was developed in the summer of 2018 following one-year-old Hank Sutherland's diagnosis of a rare mitochondrial disease known as Alpers-Huttenlocher Syndrome. We work to spread awareness of Alpers and all other mitochondrial diseases, and to organize fundraisers devoted to the Norton Children's Neuroscience Institute through the Norton Children's Hospital Foundation.
Hank was living life to the fullest, doing everything a typical one year old could do. He loved being outside, going for wagon rides, watching his brother Bryton play baseball, and playing with his dog, Lucy. However, on May 25, 2018, we woke to find Hank having a strange rhythmic jerking in his left arm and right leg. The EMTs confirmed it was a seizure, and rushed him to Norton Children’s Hospital. Over the next 7 weeks we battled these jerks and twitches day in and day out. Numerous treatments and anti-epileptic drugs were administered and would only stop the jerking when he was completely sedated. The staff at Children’s wrapped their arms around us and made this difficult time bearable, we are forever grateful for the way they cared for Hank and supported our family.
After what seemed like an eternity, we finally received a diagnosis... a very rare degenerative disease called Alpers that affects 1 in 100,000. Alpers is a progressive neurological disorder that begins during childhood and is complicated in many instances by serious liver disease. Symptoms include decreased muscle tone, unmanigable seizures, and loss of cognitive ability. “There is no cure” the doctors told us, “and very few treatment options.” Currently, the only treatment consists of vitamin therapy and symptom management We were mortified as they informed us that he may have as little as a few months to live. After a few days of praying and mourning, we decided Hank is still fighting... so there is no reason we shouldn’t be as well! As family heard of the news, one of them informed us of a symposium the next week hosted by the United Mitochondrial Disease Foundation. I gathered up several copies of Hank’s medical records, X-rays, scans, and medications, then headed to Nashville. What a blessing to be able to speak to doctors and researchers from around the world just a week after Hank’s diagnosis! I was directed to find Dr. Amy Goldstein from the Children’s Hospital of Philadelphia (CHOP), one of her specialties is his rare mitochondrial mutation. I gave her all of his records and she connected with our neurologist in Louisville. She changed some of his medications, improved his “mitochondrial cocktail,” and insisted we bring Hank to CHOP as soon as he was stable.
Hank’s seizures left him unable to eat without aspirating, so he had G-tube surgery and we spent the next few weeks learning a new life at home with a baby that had almost no muscle tone, lots of medications, supplements, and equipment. We flew to CHOP several times to meet with Dr. Goldstein and the wonderful team who helped us track Hank’s progress and discuss options. The neurology team at Norton Children’s partnered with the team at CHOP and other specialists around the country to give Hank the longest and best life possible. There are ongoing mitochondrial research programs in place at CHOP and through the Norton Children's Hospital Foundation which give us hope of finding a cure so that no other families have to feel this heartache in the future, we feel strongly that these research programs could one day improve the lives of those that suffer from this terrible disease.
Our sweet Hank fought his hardest for two years, every second a blessing. We sang to him, and read to him, and often caught the joy he felt in his eyes during every snuggle. We loved when he would babble, and let us know when he was happy, or just really liked the song that was on. He especially enjoyed spending time in the pool where he could float with Mom, Dad, and the best big brother, Bryton. Hank threw us some curveballs and kept us on our toes, but he taught us so much about love, strength, and hope. On August 9th, 2020, our mito warrior gained his wings and became our mito angel, free to finally run and sing his heart out.
We will continue to fight for a cure so that no other families have to suffer the heartache of losing a child to mitochondrial disease. For more news on HankStrong and events follow his FB page, Hope For Hank. We have been so blessed with amazing family and friends who have been there every step of the way. We can’t thank everyone enough for all of the love, support, and prayers.
Brad and Lisa Sutherland
Pray for a cure!
Just because you can't see the way, doesn’t mean
you should ever stop trying to find it.
We seek to inspire hope through the efforts of community. To contribute to the research, education, and awareness of mitochondrial diseases.
We envision a future of successful care and treatment of all mitochondrial diseases and, for all those affected, a life in all it's fullness.
Thousands of children in our region live with a neurological disorder ranging from epilepsy, cerebral palsy, and brain injuries to mitochondrial diseases such as Alpers-Huttenlocher Syndrome. Kentucky’s only full-service, free-standing children's hospital, Norton Children’s Hospital, is the only pediatric facility in our area with the expertise to care for these complex conditions. Proceeds from HankStrong events will specifically benefit the Norton Children's Neuroscience Institute, affiliated with the UofL School of Medicine, through the Norton Children's Hospital Foundation. It is through the support of donations and fundraisers that will help this program continue it's work and research, giving patients and their families hope for tomorrow.
In this video, Dr. Vinay Puri, MD, the Division Chief for Child Neurology and the Neurologist in Chief at Norton Children’s Hospital, gives a warm introduction and provides a better understanding of mitochondrial disease at the 2021 HankStrong Legacy Golf Scramble.