Los Encinos Student Will Ask U.S. Congress to Remember Him

Although it’s too much for a young child to truly comprehend, 7-year-old Jonathan Platt Jr. understands that his pancreas has stopped working and now his mommy, daddy and insulin pump must be on call 24/7 for support. From June 20-22, he will be in Washington D.C. to let Congress know how difficult this arrangement is for him personally.

“It is so hard to live with diabetes because you have test your blood sugar eight to 10 times everyday and it’s really hard to do it at school,” Jonathan told Encino Patch as he demonstrated how to use his testing strips and insulin pump, which is attached by a needle to his buttocks.

His mother, Angie Platt, said her son’s honest sentiment was a big part of why his application stood out from the 1,200 others sent to the Juvenile Diabetes Research Foundation, (JDRF) to participate in the "Promise To Remember Me Campaign." The Platt family also sent in a video with the application, in which Jonathan closed with the line, “I’m just a kid. I shouldn’t have to think about this stuff.”

Jonathan will be part of a group of 150 children from all over the United States selected to be Junior Delegates in Washington D.C.  The whole group of children will sing, “Promise To Remember Me,” on the steps of Capitol Hill along with celebrities with diabetes, Mary Tyler Moore, American Idol’s Crystal Bowersox and others.  

Thirteen of the children from California will meet with Sen. Barbara Boxer (D-Calif.) and Sen. Dianne Feinstein (D-Calif.). Then, Jonathan will be one of three children meeting with California Congressman Henry Waxman in a one-on-one meeting regarding his illness. The last day will end with a hearing before Congress where Jonathan will testify.

“I’m showing them my scrapbook and I’m practicing a script with all the words I’m going to say,” Jonathan said.

Angie Platt said that JDRF has received funding of $150 million per year through 2013, but it’s very important to keep the funding coming otherwise the researchers will wrap up their projects instead of continuing them, if they think the funding is drying up.  Therefore, JDRF orchestrates these D.C. visits every two years.

“The funding is important and it’s also really cool for these kids to have this experience. It empowers them and they don’t feel like victims, but they are working and helping to find a cure themselves,” Angie Platt said.

In October, 2009, after a few weeks of bizarre behavior, which included excessive thirst, frequent urination and the sudden onset of bed-wetting, Angie Platt received her son’s difficult diagnosis, which instantly changed their lives. 

“He was drinking an 8-ounce glass of water every 30-minutes so I took him to the doctor.  There’s no adjustment period. We had no family history. The day after the diagnosis, you’re giving shots and checking blood sugar. Luckily I don’t work because the first year I was at his school five times per day because he was too young to understand or do the testing himself,” Angie Platt said.

Angie Platt said that because Jonathan is very tall for his age, he is producing a large amount of growth hormone and that means his blood sugar is very erratic. This translates to many sleepless nights for the whole family because they must check his blood sugar at 10 p.m, midnight and 3 a.m.

“If you didn’t know Jonathan had type one diabetes you wouldn’t suspect it. But I have to tell everybody. As a parent, it’s almost a 24-hour job.  At some point we have to turn it over to him. Every aspect of his life is impacted — school, summer camp and play dates. He can go low in a moment's notice and you have to be ready to respond,” Angie Platt said. 

Jonathan’s grandmother, Astrid Willis, said she helps out as much as she can, to give her daughter a break. But even during a rare four-day vacation to Hawaii with her husband, award-winning music publisher Jonathan Platt Sr., Angie had to monitor her son’s blood sugar via telephone. That was the time Jonathan's pump became dislodged.

“It took about 45 minutes for Angie to walk me through reinserting the pump. I’d never done it before and I apologized. Jonathan was so brave,” Willis said.

Angie Platt is hopeful that an artificial pancreas, which would look similar to the pump her son wears now, will be perfected so it would eliminate the frequent blood sugar testing. This is especially important because insurance companies won’t cover more than eight tests per day in many states.

“They think we are over-testing, but research has shown the more control we have on the blood sugar, the less severe complications like blindness or loss of limbs occur. Why would I prick my kid more than I have too?” Angie Platt said.

Even though it’s been a difficult road, Angie said this has brought her family closer together and they have been very grateful for close friends that have stepped up to learn how to manage her son’s blood sugar on play dates.

“He’s getting good at managing it himself but he’s a kid," Platt said. "I have to go down a check list with anybody I leave him with and we carry a glucogan shot at all times. So we try for him to have a normal life and…"

“It’s not succeeded” Jonathan laughed and surprised his mom when he quickly finished her sentence.

But his father, award-winning music publisher Jonathan Platt Sr., said it's hard to explain how proud he is of his son.

"The fact that Jonathan has been chosen to be the voice for so many children that are coping with the challenge of Type 1 Diabetes makes me the proudest father in the world!" he said. "This will likely be the most rewarding week that our family has ever spent together, and it is for a terrific cause."