adison Dodge of Milford lives with her family and two as-yet incurable diseases. She was diagnosed at age 5 with Type 1 diabetes. In 2008 she was diagnosed with eosinophilic gastrointestinal disorder (EGID), a rare condition that ulcerated her digestive tract.
Diabetes and EGID complicate her life, but the diseases neither define nor confine Madi, now 14. She focuses outward, on her goals. She turns her ailments into action.
“The day that I was diagnosed (with diabetes) I told myself that I was going to help others dealing with the same things that I would, until there was a cure.” She vowed to help find a cure.
The 5-year-old Madi signed up for the American Diabetes Association’s Walk for Diabetes and formed her own team, Madison’s Prayer, to raise money for diabetes research. “If I was going to help find that cure and to reach my goals with helping others, I was going to need to pray,” she says, “so that’s why I chose Madison’s Prayer for my team name.”
In addition to the annual walk, the teen crafts and sells journals and photo books for research dollars. She’s sold more than 500 journals door-to-door and at community events. She organizes fundraising pancake breakfasts, raffles and Skate4aCure, and she speaks at ADA events.
“I heard her speak three or four years ago,” says Nina Pletcher of Milford, a registered dietitian and certified diabetes educator. “The most impressive thing I heard her say was that diabetes affects your heart, and she was hoping it wouldn’t, because she would never have the chance to experience what it was like to have a broken heart. She keeps it real. She’s always been that way. I’ve never known her to shrink from the dialogue and the opportunity to talk about her circumstances.”
Carlos Mir of Delmar, market manager for the ADA, tells this story: “We were at a gala with Mike Castle (co-chair of the Congressional Diabetes Caucus), and she was giving a presentation.” Madi spoke about the ADA-sponsored Sugar-free Weekend Retreat she attended soon after she was diagnosed and how the experience helped her. “The next minute, after the presentation, we had $8,000 donated on behalf of Madison,” says Mir.
Madi’s mother, Wendy Dodge, felt conflicted about sending Madi to that first retreat. “The ADA said I should send Madi because there were lots of kids there who had a chance to work through their anger and negative feelings,” Wendy says. “I got off the phone and thought, here’s this sweet 5-year-old who has none of those feelings. She was perfectly happy, accepted all of it. Did I really want to send her?
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“Madi said to me, ‘Why don’t you want to send me?’ I told her I was afraid that it might teach her to be negative. She said, ‘Well, Mom, have you thought that maybe I could go and teach other people to be more positive about their diabetes?’ She’s been there 15 times or so, started as a camper, and she’s now a volunteer and teaches sessions for the younger children.”
The annual family retreats are held at Camp Arrowhead in Lewes. There, in September 2009, Madi presented a workshop she created, “Taming the Diabetes Monster,” for a group of 14 children affected by diabetes.
The only visible sign of illness in the poised young lady: the feeding tube taped to her cheek. As she spoke, focused on the children, she repositioned the tube offhandedly—as if it didn’t matter—behind her left ear. For her ulcers to heal, Madi had to stop eating. Formula through the feeding tube nourished her for months. EGID stole six months of eighth grade from her.
She was well enough to begin ninth grade in September 2009. Her feeding tube was removed shortly afterward. Though no longer on formula, Madi can only eat approved foods. After every new food trial, Madi undergoes scoping and biopsies before final approval.
Each day at Milford High School, Madi visits school nurse Renate Wiley. “She’s a confident, mature young woman, who is very knowledgeable about her disease and condition,” says Wiley.
When school started, Madi, on her own, wrote a report for the nurse and all her teachers, so they would feel comfortable about her diseases. She enjoys teaching and wants people to understand what she deals with, not just for herself, but for their own enlightenment, says Wiley. “She’s not ashamed of what she has.”
The nurse has seen Madi’s blood sugar levels skyrocket and plummet in the same day. EGID sabotages her diabetes control. “It messes with her. She’ll go right back and push forward,” Wiley says. “I think, out of the school year, I’ve convinced her to go home maybe three times.
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“There are a lot of accommodations that can be made for her. She’s not one to try to rely on those things or try to be different from any other student,” Wiley says. “When I’ve talked to her about how difficult it must have been to not eat for so long or to only eat a few limited things, her whole attitude was, ‘Yeah, but it’s not so bad, because I know there are others who can’t eat anything.’ She would minimize her own problems that you would think would be so difficult. She is a champion for others.”
Jeff Dietz of Wilmington directs Camp Possibilities in Darlington, Maryland, for children with diabetes. Madi first attended in 2005. Two years ago, a first-time camper’s mother told Dietz this story:
She was getting ready to leave her daughter at camp. The girl, anxious about staying, walked to the car, appearing to need something. Madi approached and began talking with the scared camper. The mom described Madi as an angelic girl who came and engaged her daughter, who now loves camp. “That’s just Madi,” says Dietz. “She is so kind and so helpful.”
Madi likes to help adults with diabetes get back on track. “A lot of adults lose sight of the fact that they need to take care of their diabetes, and they don’t see that not taking care of it could make them go blind or cause many problems. So I stress that they need to check their blood sugar and count their carbs, to make sure that they are taking all the medication they need to stay healthy,” says Madi.
She supports children who are newly diagnosed with diabetes. She visits them and takes a gift bag that she decorates and fills with a journal, bandanna and “different gifts to make it fun.” She includes a self-written letter about how she handles her diabetes, how she doesn’t let it stop her from doing anything she dreams of.
“I’ve seen her with kids who have been first diagnosed, helping them through it and explaining what everything is—what a pump is, how you manage your sugar, how important it is to test your blood sugar,” says Bliss Soucek of Milford.
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Madi and Soucek, a third-year law student, met in 2002, when both won Milford beauty pageant titles. They became friends.
“She inspired me right off the bat,” Soucek says. “I remember this little thing going up to people—senators and congressmen—introducing herself, explaining this facet of her life (diabetes) and encouraging them to raise awareness for her. It was incredible.”
Because Madi did so much to raise money and awareness for diabetes, Soucek wanted to help. “I talk about her wherever I go, someone so young, yet so determined. She’s always positive. I’ve never heard her say a cross word. She never feels pity for herself, and she has so much compassion for other people.”
Soucek tells others, “I don’t have (diabetes) in my body, but I have it in my heart, because I have this friend who suffers from this, who has motivated me and inspired me.”
The law student will graduate in May. She decided to practice family law, where she can advocate for children.
An ADA ambassador, Madi advocates in Washington, D.C. She tells senators and congressmen why there needs to be a cure for diabetes. “I’ve been dealing with (diabetes) since I was 5. I take care of myself, and they listen to that,” Madi says. Her advocacy promotes funding and research.
“I think I was born ready to volunteer,” she says, “because I’ve been doing the (American Cancer Society) Relay for Life before I was 3, walking around the track with my family.” She’s seeking ways to raise money for EGID research, which receives no government funding. For her volunteer service, Madi was named Delaware’s 2009 Prudential Spirit of Community middle school honoree.
“I still have time for a social life,” says Madi. She loves shopping and fun with her friends. She loves to sing, dance, act and perform in shows. Her family supports her endeavors. They look out for her and keep her motivated, she says.
“Madi seems to be able to manage all of life’s circumstances, remain grounded and keep things in a healthy perspective,” says Dietz. “She is inspiring.”
For diabetes information, visit dediabetescoalition.org, diabetes.org
For EGID information, visit apfed.org
Page 5: A Week in the Life of a Teen Diabetic | From Madi’s caringbridge.org journal.
A Week in the Life of a Teen Diabetic | From Madi’s caringbridge.org journal.
February 16 I had a pretty good day. I didn’t have school, so I stayed home, while my mom went to work. (It doesn’t seem fair that teachers have to go in, but I guess that’s just life.) I didn’t feel too well this morning, and my blood sugars have been through the roof!! But I feel better now, and I think my blood sugars are finally coming down after 2 insulin pump site changes. I have just been working on homework and stuff like that. I also got to play my new Sims 3 game a little, and that was fun. I had an eye doctor appointment and the start of a cateract they saw in my eye was unchanged. They said that studies show that eating a whole lot of fruits and veggies can stop, and even reverse cateracts. Lucky me! (You won’t believe this!!) He said that EOS could be the best thing that ever happened to me! Ha! Anyway, I got a pair of Vera Bradley perscription sunglasses! They are soooo cool 🙂
February 18 I had an interesting day today. I went to school for the first time in weeks, because of the snow. It was hectic, because everyone was so excited to see their friends again. We had a 2 hour delay too. It was awesome! I was supposed to have blood drawn, but my blood sugar was much too high, and I couldn’t have it drawn with a high blood sugar. So I have no idea when I’ll get my bloodwork done. But I have practice for Bye Bye Birdie on Saturday, and after practice I have a photoshoot for the Delaware today magazine that I’ll be in. I am worried for the musical. We missed nearly 3 weeks of practice, the show is 2 weeks away, and we’ve barely had any practices!
February 20 I just realized that this is probably the longest update I’ve done in awhile. I have been really busy lately, and actually, I haven’t been feeling too terrif either. I was sent home from school the other day, and had to miss play practice :/ I thought it was a bug or virus or something…my friend is incredibly sick, and I was hoping I didn’t catch something from him when he sat the table at lunch. However, at practice today, I was fine. Afterwards, I was really tired. So I took a nap before dinner, and it was a nice nap 🙂 My mom also made breaded chicken and brown rice with gravy, and it was delicious. I really enjoyed it. One of my neighbors brought us a GIANT chicken from a butcher in Dover, and the chicken was amazingly fabulous (hehehehe), especially in the biscuit breading. My blood sugars had been really high earlier, which is why I think I haven’t been feeling well, but after dancing today, my blood sugar came down to 123! Yay!! That’s what I call dancing therapy 🙂 There’s also shopping therapy after endoscopies, rockband therapy for when I’m upset, and computer therapy for stomach aches. And sleep therapy for dizziness and tiredness, of course! 🙂 So many types of therapies! (I could almost be a therapist!)
February 22 I had an interesting day, blood sugar past 600 and being sent home from school halfway through the morning. Most high school students would be more than happy to go home from school all the time, but I just wish I could stay in school for once. Anyway, it gave me some time to rest, which was nice. I just wish I didn’t have to miss instruction in order to get my nap.