Hi! We are Ayden and Faith Hingsbergen, and we live in Cincinnati, Ohio. We were diagnosed with a mitochondrial disease called, Leigh’s Syndrome, lesions on the brain stem, at age 4 and 2 years of age. I’m Faith’s big brother, Ayden, and I am now 8 years old and in the 2nd grade. I love all my animals, and I like helping my mom take care of my little sister. I like to make Faith smile and laugh.
I’m Ayden’s little sister, Faith. I have had two open-heart surgeries, one at 6 months and one when I was 3 years old. Both Ayden and I are g-tube fed to stay as healthy as possible until we find a cure for mito. I have spent a lot of time in the ICU Department at the Children’s Hospital. My first time was in 2010 for 2 months. I had an infection that spread through my body and caused me to go into cardiac arrest for 7 of the longest minutes of my mom’s life. Thankfully, God wasn’t ready for me, and I am now home with the help of hospice and four fun loving nurses that help my mom and dad care for me. I was admitted again in 2011 and, believe it or not, it was the same date, Election Day. Thankfully, it was only a one month stay that time around.
We have met so many wonderful strangers that we now call family because of mito. In addition to meeting other mito families, we have met a few local groups that have supported us by organizing several events, including a golf outing, Mito Mania dances and a bike run. For the past four years, our local bike group, Southern Ohio Bikers, has been raising awareness and money for our research fund by holding a bike run that takes place the week of Mito Awareness week. They also hold a Valentine’s dance that goes towards our fund. We are so blessed with so many caring family and friends that support these events every year.
The big news is that both Faith and I have been on the EPI-743 drug trial for a little over a year now; the improvements with Faith have been awesome, and I no longer need to wear glasses. With help from physical and speech therapists that come to the house and the many nurses that help care for Faith, we have noticed huge improvements. We are truly blessed to have so many wonderful caring people in our lives.
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.
Through research, the medical world will one day have the resources to help children like Ayden and Faith. Until then, please help their family and the UMDF “redefine hope” for everyone affected by mitochondrial disease through a donation to the Ayden and Faith Hingsbergen Research Fund.
Thanks for reading our story. God bless you and your family.
Ayden and Faith Hingsbergen