Caleb was born on April 29, 2010, after a normal pregnancy and delivery. There were no major symptoms that anything was wrong until Caleb was about 9 months old. The issues seemed unrelated and started out small so we kept an eye on them. After a few months, the issues were progressing and then he started having vomiting spells. At around 14 months old, we started going to doctors to try to see what was wrong. A podiatrist referred us to the Scottish Rite hospital in our state. After our initial appointment with their podiatry department, we were referred to a neurologist there. After a few initial tests, he decided to do an MRI on September 28, 2011. The MRI showed necrotic lesions on Caleb’s brain, which when combined with some of the blood work, pointed to Leigh’s Syndrome, a type of mitochondrial disease.
At this point Caleb was still very mobile, crawling and cruising around tables, and talking at an appropriate level for an 18 month old. He had stopped throwing up and started gaining weight so we were hopeful. Within a few months, we noticed he wasn’t pulling up and was beginning to lose words and sounds. By May of 2012, he was unable to crawl and could only roll where he wanted to go. He had lost weight and despite our best efforts physically could not eat by mouth all the calories that his body needed. In June, the decision was made to have a g-tube placed. He started gaining weight immediately. However, within just a few weeks of having the surgery he was unable to eat anything by mouth successfully and had lost all of his words with the exception of, “Yeah” and “No.” Cognitively he was still present, but his body was failing him.
On September 16, 2012, we took him to the hospital because he had stopped breathing, twice, for close to 30 seconds each time. They repeated an MRI and it showed significant deterioration of his brain. We said goodbye to Caleb just three days later, as it was evident; his major organs were beginning to be affected. We were heartbroken at our loss, but so thrilled for Caleb to now be healed and uninhibited by his earthly body. We had less than a year with him after learning of this disease. Even though his body was deteriorating, his spirit never wavered. He was always happy, quick to smile, and loved people. He was an amazing gift to us and we are forever changed by having him in our lives. You can read more about our journey at www.calebjacobs.com.
The United Mitochondrial Disease Foundation (UMDF) was formed by families affected by mitochondrial disease. The Foundation provides support to families and funds mitochondrial disease research. Since 1996, the UMDF has funded more than $10 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.
There is currently no cure for mitochondrial disease. Caleb Jacobs was the most engaging and joyful little boy you could ever hope to meet. His time on this earth was much too short, just two and a half years. In that time he affected every one that he met and he continues to affect people even now after he is gone. The light in his eyes and the joy on his face are evident, even in his pictures.
Through research, the medical world will one day have the resources to help children like Caleb win the battle against mitochondrial disease. Until then, please help the Jacobs family and UMDF “redefine hope” for everyone affected by mitochondrial disease through a donation to the Caleb Jacobs Research Fund.
We need more research to find a cure.
We thank you for your love and support,
The Jacobs Family