Child’s diagnosis inspires family to raise $17,000 for diabetes research

By: Katrina Lewin
   Jonah Soos was diagnosed with diabetes when he was only 15 months old, a time his parents, Wendy and Jeffrey Soos, described as "unbelievably scary."
   They brought him to the hospital but had no idea that by the time he got there, he was 26 hours away from being in a coma.
   The family, who lives in East Windsor, was still in shock from the news when doctors began educating them about diabetes; his pancreas does not create the insulin it needs to process sugars and carbohydrates.
   It was overwhelming, but they had the fortune to meet a doctor whose young son also has diabetes.
   "This man walked into our room … and it was almost as if an angel walked into our room," Ms. Soos said. The doctor spent over an hour giving advice and tips to the parents, and brought his son in to meet Jonah the next day.
   Having someone to speak with helped the family see that there was hope. Diabetes can be difficult to manage but many people with the disease lead long and successful lives. It was intimidating to them, but they have found that you have to stay on top of your situation.
   "We control the diabetes," Ms. Soos said. "We don’t let it control us." She and her husband have learned a lot about diabetes and have started educating their children, Benjamin, 4, and Jonah, now 2 and one-half years old. Both children know that he needs insulin, and that he shouldn’t have sweets.
   Benjamin helps keep an eye on his younger brother. "I make sure Jonah doesn’t put anything in his mouth," he said. "Candy or toys."
   Luckily for families with children who have diabetes, there is hope, starting with the Juvenile Diabetes Research Foundation.
   Ms. Soos, a member of the JDRF board of directors, and her family raised over $17,000 for the foundation at its Walk to Cure Juvenile Diabetes last fall.
   Ms. Soos said she was introduced to JDRF by one of her friends, who drove over to the JDRF and picked up a Bag of Hope that had literature in it, and a letter that said "basically that we know exactly what you’re going through, and we’re fighting hard for you, for your son, for your family, for support and also to find a cure."
   Meeting with families at the JDRF helped the Soos remain in perspective. For "the first time we felt like we fit in somewhere," said Ms. Soos. "I said to myself, this is something that I want to get involved in."
   The foundation focuses on finding a cure for juvenile diabetes, and gives 80 percent of their proceeds directly to research. She said, this amount is remarkable when you note that most major charitable organizations give only 20 to 30 percent.
   Ms. Soos, who has been appointed to board of directors at the mid-Jersey Chapter of the JDRF, knows how much the organization cares. "I see it first hand, and everything’s for the families," she said. She and the other board members are always asking, "What can we do to find a cure?"
   Family and friends want to help as much as possible, but "all year ’round, they really feel helpless, because this is a major thing they have to understand," Ms. Soos said. With the exceptions of Mr. Soos’ mother and Ms. Soos’ father, friends and family don’t "truly grasp what’s happening," Ms. Soos said. Even when they understand, there is only so much that they feel they are able to do.
   To this Ms. Soos tells them, "There is something you can do. Come time for the walk, you can raise as much money as you possibly can to find a cure."
   Last year they had goal of $1,500, which they came up with because Jonah was 15 months old. They had doubts about raising that much, but the outcry of support, generosity and letters was overwhelming.
Living with diabetes

   In order to test and keep track of his blood sugar, Jonah must have his finger pricked every two hours, and the blood tested. Twelve times a day accumulates quickly; it "adds up to about 4,380 per year — 37,000 pricks by the time he’s 10 years old," Ms. Soos explained.
   Everything Jonah eats is measured and recorded so that his parents can calculate how much insulin to give him.
   He gets four shots of insulin a day. The last one is at about 3 a.m., which Jonah is able to sleep through. At night, they use a slow-release, long-acting insulin so he always has some in his system.
   If his blood sugar is low, Jonah’s parents will wake him up and give him food. "He sits up, eats a banana, and goes back to sleep," Ms. Soos said. "He pretty much knows (what to expect)."
   She said, "The scariest parts are at night." Like many diabetic children, Jonah experiences nocturnal lows; since he hasn’t eaten for several hours, sometimes the insulin levels exceed the carbohydrates they were given to break down.
   When they’re sick, diabetic children tend to have very high blood sugar, which can cause complications later in life if left untreated.
   "If his levels go (up very high), even in a given day, we have to test his urine," to see if he has secreted ketones, a substance created when the body burns fat, that can be an indication of other problems. "He’s in diapers, so we have to squeeze it out of his diapers onto a little ketone stick to make sure he doesn’t have any in his urine," Ms. Soos said.
   If they find ketones they have to call the children’s hospital and they will recommend a course of action. After a year and a half, the family says they can accurately predict where his levels will be about 60 percent of the time.
   One of the most obvious signs of an issue is a change in behavior. If Jonah is "crying or screaming or just out of control, which is not in his demeanor, we know he could be low," Ms. Soos said. "Or he could be having a 2-year-old tantrum."
   If blood sugar levels dip into what is considered an official low, steps must be taken to correct it. The family has found that cake gel, used to write names on birthday cakes, is a quick way to safely raise Jonah’s blood sugar if he needs it.
   "He gets a whole tube," Ms. Soos explained. "Just spurt it in. He knows to rub it in his cheek" to get it into his system quickly.
   As luck would have it, Jonah’s great-aunt knows the CEO of the company that makes the gel, who generously donates all the gel they need. "We get packages and packages," Ms. Soos said.
   There are some things that have to be learned through trial and error, like the way each individual processes food. Different people process foods differently, Ms. Soos explained. They’ve learned that if Jonah "has grapes, it’s going to raise his sugars through the roof. If we give him grapes, it’s got to be balanced with something very low carb."
   They also try to substitute forbidden foods with ones that the whole family can enjoy. Ms. Soos said, they don’t have cake with icing, which is almost pure sugar. Instead, they opt for ice cream cakes. Ice cream is a food that "has an equal amount of fat and protein and carbohydrates. It’s a good equilibrium."
Walking for a cure

   The JDRF Walk to Cure Juvenile Diabetes will take place on Sunday, Oct. 29 on the Cook campus of Rutgers University in New Brunswick.
   Because it is on Halloween weekend, many people choose to come in costume, but the Soos’ team, Jonah’s Jamboree, will wear matching T-shirts that say "JDRF is soaring to new heights."
   The team had 34 walkers last year, to the family’s surprise. "We thought that we’d have a couple," Ms. Soos said. "This year, right now, we are going to have 38 walkers and one dog, and one baby in-vitro." They’ve raised about $5,000 so far, which is about where they were at this time last year.
   Ms. Soos’ friend Amy Walton, is putting together a sip-and-shop event on Saturday, Oct. 21 at the Lawrenceville Inn. The Inn is donating 100 percent of the proceeds to the JDRF.
   The JDRF is striving to find a cure, but they’re also "trying to focus on dealing and living with diabetes today, and looking for the newest things out there to lessen the long-term complications," which include seizures, kidney failure, heart disease, nerve damage, dental infections and blindness.
   The Soos family doesn’t just sit idly by and wait for donations. Even at their young ages, the Soos children are involved. Jonah and his brother Benjamin accompany their mother on "wagon walks." They decorate their wagon with balloons and walk around the neighborhood, putting fliers in mailboxes to raise awareness and help raise money.
   Benjamin and Jonah met U.S. Sen. Robert Menendez (D) as part of JDRF’s Promise to Remember Me Campaign, a JDRF Grassroots Campaign that is geared toward introducing elected officials to children with diabetes.
   When the time comes for the vote on whether or not to support and fund diabetes research, officials have promised to remember the children they met, and support the research.
   They have also contacted their local congressman, Rep. Chris Smith (R-4), though they have yet to hear back from him).

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   For parents whose children have been recently diagnosed, the Soos have some advice: reach out. "Talk to other parents who have been dealing with it," said Mr. Soos. "There you find out the real information on what works, what doesn’t work, what you can do, what you shouldn’t do."
   Doctors give medical advice, but "what they can’t really tell you is how to handle it from a practical standpoint daily."
   The family has reached out, but they have also been there for others. Ms. Soos recounted an event that happened at the swimming pool this summer. She called her son over to get his insulin, and found a new friend.
   A woman at the pool, who had overheard the Soos,introduced herself and stated that her son had recently been diagnosed with diabetes. The two have spoken many times since.
   Education about juvenile diabetes is one of the main ideas behind JDRF. "There is a false pretense that people can grow out of it," Ms. Soos said, but "there is no cure yet."
   The JDRF Walk to Cure Juvenile Diabetes will take place on Sunday, Oct. 29 on the Cook campus of Rutgers University, New Brunswick.

   If you would like to contribute, you can go to http://walk.jdrf.org, or mail a check, made out to the JDRF, to JDRF Mid-Jersey Chapter, 28 Kennedy Blvd., Suite 180, East Brunswick, NJ 08816. To donate to this team, be sure to write "Jonah’s Jamboree" in the memo portion of the check.

   The Sip and Shop event will take place on Saturday, Oct. 21 at the Lawrenceville Inn, 2691 Main ST., Lawrenceville, NJ. For information, call (609) 858-2721 or e-mail [email protected].