Father’s Love Seeks a Cure

August 17th 2012   ·   1 Comment

Utica Phoenix News

It was 10 days after his 11th birthday that Louis Thomas Brindisi, Jr. was diagnosed with Juvenile Diabetes. His mother, Barbara, noticed that he was drinking much more and urinating more frequently and took him to his Pediatrician.

These are among the leading indicators of the onset of the disease.

That is when his father, Louis T. Brindisi, Sr. got the call that he would have to rush up to the Joslin Center, part of  Upstate University, immediately. His son’s blood sugar level was over 600.

“We had no idea how serious the situation was. I only knew of Type 2 Diabetes in adults with the amputations and blindness that can occur. I only knew Diabetes as an attorney. I had no actual knowledge of the disease in children. We rushed up to the Joslin Center and Louis Thomas was admitted overnight.”

“We were some crying people when we learned of the possible consequences of childhood Diabetes. It is a terrible disease and it just came out of nowhere.”

The word ‘diabetes, is the Greek word for “siphon,” and was associated with never being able to retain fluids and with wasting away. Ancient treatments did little more than suggest dietary changes, and as late as the 17th Century, snake flesh, coral, flowers and nettles were amongst prescribed remedies.

Into the 20th Century, those with Diabetes could expect to be put on extremely low calorie diets (as little as 450 calories/day), and that they would eventually starve to death. In 1921, two Canadian doctors discovered the role of insulin, and this revolutionized the treatment of the disease.

Dr. Elliott P. Joslin was the first physician in the U.S. to make Diabetes his primary area of expertise. One year after he began practicing medicine, his own mother received the diagnosis, and it was through following her progress and the work of a German professor which shaped his theory of treatment:  Diagnose early and treat vigorously through carbohydrate-restricted diet and fasting and prescribe regular exercise.

Joslin penned two books on the disease. In “The Treatment of Diabetes Mellitus,” he described how he reduced death rates by twenty percent and in “Diabetic Manual—for the Doctor and Patient,” he created the very first handbook for the sufferer of the disease.

Joslin also expanded the role of nurses in the care of the illness. Originally termed “wandering nurses,” these professionals would go out into the community and instruct people about the disease and its management.

The field has evolved, and they are now called “Certified Diabetes Instructors.”  Dr. Joslin began the Joslin Center in Boston in the 1950s, and there are now Joslin Centers spread throughout the United States.

It was at the Upstate Joslin Center in Syracuse that the Brindisis began their education on how to best deal with their son’s newly discovered, and potentially deadly illness.

“I immediately went on the internet to find out more. I was inquisitive and looked into every type of foundation and organization dealing with Childhood Diabetes.  That’s where I found Friends for Life, an organization for families with children with Diabetes. They have a yearly convention in Orlando, Florida.

“We took him to Orlando for the conference. We attended the lectures and visited the booths. It was like a convention. We found out that 1,000 children were diagnosed with Diabetes in the previous year.

According to NIH statistics, as many as 3 million Americans may have Type 1 Diabetes, and each year upwards of 15,000 children and 15,000 adults are diagnosed. Approximately 80 people day receive a diagnosis. Type 1 Diabetes comprises between 5 and 10% of all cases, the most of which are Type 2, which is mostly diagnosed in adults but of late has been increasing in children as well. Worldwide, the incidence of Type 1 is 3% worldwide in children under age 14.

About the conference, Brindisi continued:  “It didn’t make it any easier for us and Louis Thomas, but at least we had found better resources. I became friends with Barbara Singer and husband Shelly. They are one of the first 6 founding families of Diabetes Research Institute. The DRI is the only organization worldwide dedicated to finding a cure to childhood diabetes.

“The Diabetes Research Institute is the only national organization that has pioneered new therapies for a cure for the disease. It is located on the campus of the Miller School of Medicine in Miami.

“Norma Kenyon was in Orlando at the DRI booth. We became friendly with him as well and were invited to go to the DRI and tour the laboratories. We were introduced to the various scientists and researchers who are dedicated to finding the cure.

The motto of the Institute is,  ‘Leading the world to a cure.’ All of the researchers and scientist must sign an agreement that they will disclose their findings to the world. “They cannot keep it to themselves for personal or economic gain. They must divulge their research and they all work along with leading researchers  worldwide,” said Brindisi. “Robert Pearlman, the CEO of Diabetes Research Institute makes sure that anyone can have access to any research  they have.”

DRI researchers have been pioneering stem cell replacement of the Islets of Langerhans. These islets that constitute only 1 to 2% of the mass of the pancreas produce all of the vital hormone insulin used by the body.

Brindisi added, “They have people whose Diabetes they have actually been able to reverse. What is happening in Diabetes is that the Islets of Langerhans no longer produce the insulin. But these DRI scientists have been able to isolate the stem cells and put them back into the body, but they tended to congregate, to get sticky.

“So they brought in biomechanical engineers to create a web or mesh to place the Islets in individually, restructuring them. Then put them back into the body to produce insulin. This is cutting edge research. Dr. Camillo Ricordi, the Scientific Director, and Chief Academic Officer of the University of Miami Diabetes Research Institute heads up the Cellular Transplantation Department.”

Today Louis Thomas and millions of other American children live with Diabetes. He monitors his blood sugar 5 to 6 times a day. This is done by pricking the tip of the finger to actually test the level of sugar in the blood.

Louis Thomas also has what is called a pod. It is a medical device that attaches onto the skin of the upper arm. The pod is changed every three of four days. Nova Log, the insulin he uses, is injected by hypodermic needle into the pod.

If his blood sugar is high, he drinks fluids to dilute the sugar and adjustments are made in the amount of insulin taken through the monitor. The insulin then can move the sugar from the blood stream into the muscles of his body to be metabolized. This goes on 5 or 6 times a day.

With all of this precision, monitoring and attention to detail, the younger Louis T. Brindisi is a vibrant and normal 14-year-old boy, playing on his X-box for hours, talking to his friends, and going to school. His sports are baseball, basketball and golf. But his Diabetes training has made him vigilant young man who is aware if he needs to take a break or go and see the nurse where he has extra insulin extra pods on hand.

Counting carbohydrates is the most critical food intake requirement of those living with Diabetes. The simple sugars and even complex carbohydrates convert  to glucose in the blood most readily and can cause havoc in living a stable life.

“He’s a normal 14-year-old,” says the elder Louis T. Brindisi, “full of all of the sarcasm and moodiness and fun. The fluctuations in metabolism of the adolescent are all there and he might be a bit more moody with puberty and Diabetes. But he’s a normal 14 year old,” says the father of six.

“In the years I have left in my lifetime the work of the DRI is the closest I could find for a possible cure. I want to do all I can to support this work. The last event we had was in 2009. We donated over $100,000 to DRI. I would like to match that or even exceed that for this year’s event.

“I want the cure for my son and all of the other children and families that struggle with this disease worldwide. It’s time. It is time for a cure.”

By C. Harris-Lockwood