Boy, 9, walking money to fight disease that plagues him SanTan Sun News

Boy, 9, walking money to fight disease that plagues him

April 26th, 2018 | by SanTan Sun News
Boy, 9, walking money to fight disease that plagues him
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By Coty Dolores Miranda

When Amber Cicchillo heard the news of the recent passing of Desert Vista High School senior Alexandra DePriest, her heart broke – not only for the family of the young woman who had lived with Type 1 Diabetes, but because her 9-year-old son Zach was diagnosed with the same disease six month ago

The situation worsened when a playground friend of Zach’s told him about Alexandra’s death – a subject Cicchillo and her husband Nathan had opted to keep from their son.

“Zach came to me and said, ‘You can’t die from Type 1, right?’ So we had the talk. He’s an internalizer so he didn’t say much,” said Cichillo. “He’s a tough dude, but he’s 9.”

She said her husband and their two other children – daughters Gabby, 13 and Ellie, 7 – are concentrating on staying positive about the disease that, unlike diabetes 2, is an autoimmune disease that has nothing to with diet or lifestyle.

It is both serious and stressful to manage, and the family has immersed itself in learning all there is about dealing with it.   

“A lot of people don’t get it. They hear diabetes and think it has to do with diet. It’s not a lifestyle disease. It strikes children and adults suddenly, and nothing is ever the same. It never sleeps. It’s 24/7,” said Cicchillo.

The family, along with relatives, friends and co-workers, are participating in their first JDRF (Juvenile Diabetes Research Foundation) One Walk, Saturday, April 28 at Mesa’s Sloan Park, 2330 West Rio Salado Parkway. Registration starts at 7:30 a.m. and the walk begins at 9 a.m.

“We kept hearing about how good it is to be around other people dealing with the same thing,” said Cicchillo about the One Walk and the Arizona JDRF Chapter. “This gives us something to fight back with rather than sit back and be a victim.”

Their team, “Zachary’s Infantry,” has more than 30 participants signed on. Both donations and sign-ups are good until the day of the event and can be made at jdrf.org.

Even as the Cicchillo family works to maintain a positive outlook for Zach and themselves, the reality of the disease requires constant attention.

“It’s a disease that can easily be life-threatening if it’s not monitored 24/7,” said Cicchillo, her brown eyes reflecting the constant concern she carries.

“If his numbers go up too high, he can end up in diabetic ketoacidosis, and that can be fatal. If he’s too low, he can end up in a coma. It’s nothing like Type 2 diabetes because type 1 is an autoimmune disease that anyone can get any time. It’s not from eating too much sugar, and has nothing to do with diet. In fact, he’s eating more sugar now to keep his numbers up.”

The April 28 JDRF One Walk will come one day after the sixth-month anniversary of Zach’s diagnosis.

It’s a date the family well remembers after their pediatrician instructed them to immediately take their son to Phoenix Children’s Hospital following an examination prompted by sudden and frightening changes in the boy’s health.

“It was a couple weeks after his 9th birthday,” Cicchillo recalled. “I hugged him and could tell he’d lost weight – about 10 pounds in one week. He’d fall asleep at 7 at night, and this is a 9-year-old boy! He’d tell me over and over, ‘Mom, I’m thirsty!’ and then, when we returned home after my daughter’s softball game, he was almost incoherent.”

Tested at their pediatrician’s office, Cicchillo recalled her son’s blood sugar was so high it wouldn’t register. They rushed him to PCH and his blood sugar was tracked at a dangerously high 800.

“He was in full blown diabetic ketoacidosis,” recalled Cicchillo.  

After 24 hours in intensive care, and two more days in the hospital, healthcare workers briefed the family on their new reality.

“Our life has had no choice but to change. In the beginning it was very hard, especially at night. Not knowing what to expect and how we’d have to deal with it,” she said. “The realization that it wasn’t going away was the hardest.”

Testing their son’s blood sugar was a necessity, even at night, when the couple set alarms for 10 p.m., midnight and 2 a.m.

As they readied to return to school – Zach is in third grade – they were assisted by a friend bearing gifts.

“Christie Garibay was at my house the day after we came home from the hospital with a care package ready to help us get Zach ready for school. It had things like mini juice boxes, alcohol swabs and Smarties candies,” she said, adding:

 “Christie’s daughter Sarah was diagnosed in fourth grade and is now 13 and goes to Altadena with my oldest daughter. Sarah also let Zach know if he ever needed to talk, she would also listen.”

The school health assistant, Laura Fitzpatrick, has also been a great help, said Cicchillo.

“I’ve been a parent so long at Monte Vista and employee for a few years and I always took her for granted, never realizing how amazing she is,” Cicchillo said, tearing up. “She keeps my son alive every day, and somehow does it so calmly.”

Besides her other duties, Fitzpatrick – a health assistant for 12 years – has two other students with T1D that she monitors throughout the day. One,  Cameron Kelley, age 6, has had the disease for four years.

“Promoting self-care is a skill we foster at school, and Zachary has certainly stepped up to the challenge; he’s a resilient young man who has adapted to his disease with a great deal of independence,” said Fitzpatrick.

“Cameron is another example of a student who doesn’t allow his disease to interfere with his personality or enthusiasm as a young student. Caring for these two students is the best part of my day – to see them grow and thrive like any other child is phenomenal.”

 An essential tool for monitoring T1D numbers is the Dexcom Continuous Glucose Monitoring system for diabetes management.

“When we finally got our Dexcom, life got kind of easier,” said Cicchillo. “The Dexcom is a sensor we insert into Zach’s lower back every week. It lets us see his numbers updated on my phone, or Laura’s iPad, every five minutes.

“She watches it while he’s at school and I’m at work, and I watch it all other times. It’s about $800 every few months to keep it up, but its literally a life saver. I finally started to only wake up a couple times a night. I’m still not sure when I will ever sleep peacefully again.”

Zach wears his Dexcom at his Ahwatukee Little League games, where he prefers to play catcher for his Houston Astros team, coached by his dad with his mom as scorekeeper.

There’s a lot of responsibility being shouldered by the 9-year-old himself who was taught by Fitzpatrick to give himself insulin shots four or five times daily, and test his blood sugar with a finger blood test.

“I’m not looking forward to the summer as not only will I miss the support I get from my co-workers and Laura – who‘d like to take with me for the summer – but also the paycheck as the insulin, test strips, and continuous monitor sensors cost about $300 a month. But what parent wouldn’t pay anything to keep their kid alive?” queried Cicchillo.

She said even Monte Vista students are showing support by wearing the Zachary’s Infantry shirts at school and signing up for the April 28 Walk.

Cicchillo is passionate about the One Walk, not just for her son, but the countless others affected by T1D.

“I just want to tell everyone about these kids and their fight. It’s not easy but the only choice we have is to keep fighting,” she said. “It is getting easier, but with the death of Alex (DePriest), the reality of this terrible disease hits way too close to home.”

The public’s confusion over Type 1 and Type 2 diabetes is now difficult for her to handle.

“So many people hear diabetes and think, ‘well that’s not that bad, and it could be worse’ but type 1 diabetes is a life sentence. It’s forever, or until someone finds a cure,” Chicchillo said.

“My son can’t eat anything without counting carbs and doing a calculation to find out how many units of insulin he needs. We can never take a day or even one meal off. Every time he puts something in his mouth he has to get a shot. It can be very depressing.”

“If you met us at the park, you’d never know how many times I check his blood sugar or how many times I have to save his life with a juice box. I just look like an over protective helicopter mom but the reality is he’s nine and his disease has no cure. At least, not yet. That’s what this JDRF One Walk is all about.”

Her desire to educate the public is currently focused on the April 28 Walk.

“This JDRF walk will be our first walk and the first time I’m trying to get the word out, but sometimes it feels like no one is listening, no one thinks it’s a big deal, but to Zach, me, and our family it’s something we think about 24/7: in the middle of the night, while at school, at the park, or at the ball field while he’s playing.

“It’s our life and it’s not what we’d planned at all. Our only choice is to keep fighting and keep being strong.”

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