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HERO DESIGN STUDIO
On Jul 20, 2005, at 10:07 PM, Mike Lodico wrote:
SURVIVAL: Tilleys hang tough in light of cirumstances
Jack Karlis
Tuesday, July 19, 2005
Chuck Tilley fits the mold of your typical football coach.
He’s a big man and his voice draws attention, respect and admiration from his players. He demands toughness and discipline from his players and they would run through walls for him.
If only they knew how tough their coach and his wife, Gloria, actually were.
After the birth of their first daughter, now 11-year-old Sarah, the Tilleys were blessed with twins — Justin and Kyle on July 10, 1996. They had no idea how their lives would change forever.
“We didn’t know or think anything was wrong until we had to have emergency birth,” Gloria said.
The next day, Kyle was diagnosed with Down syndrome. Justin had a series of physical ailments including a tattered spinal cord.
“I thought our life was destroyed,” Gloria said. “Biochemically, (Justin) looked like a kid with Down syndrome. Kyle was always the healthy twin, while Justin was chronically ill and has had nine surgeries. Usually you find a kid with Down syndrome that there is a higher incidence of arthritis and autism all. The diseases are connected.”
Justin has a metabolic dysfunction that causes heavy metal poisoning, severe immune system disorders and autistic-like symptoms. He also has Celiac disease, a disorder that causes problems in the intestines when gluten (found in rye, barley and oats) is ingested. The gluten acts as a poison, damaging the intestines.
Kyle, 9, has Down syndrome and also deal with the effects of heavy metal poisoning and metabolic disorders, which causes problems on many fronts for the Tilleys.
The couple started reading up and discovering alternative methods for dealing with the boys’ problems when Gloria was pregnant with her youngest child, Lauren, and the boys were infants.
It would be a necessity, as Lauren would be diagnosed with juvenile rheumatoid arthritis, various allergies and Celiac disease. Lauren’s development hasn’t been slowed, but her severe food allergies have taken their toll.
“It was bad enough to have two kids with problems and it took me about a year to recover,” Gloria admitted. “I think it’s getting easier because maybe I can understand it better and I’m used to it.”
“You’re dealing with the fact that one kid had a problem, but everyone has problems. Then another kid has problems. Then a daughter who has problems. It starts to pile up,” Chuck said.
The Tilleys take their kids to a specialized allergist, who looks at dealing with the kids’ severe allergies and is paid out-of-pocket.
“It was met with resistance from physicians. Our insurance doesn’t cover the treatment we’re giving our children,” Gloria said. “The kids have arsenic and mercury poisoning, but if they had lead poisoning the medical insurance would cover it. So they’re not covered. (The allergist) helped connect us with thousands of kids with the same problems.”
“It exceedingly difficult. If you have (an autistic) child that’s verbal, you’re lucky because they can tell you what’s wrong,” said Cris Bowen, who has an 8-year-old daughter with autism and met Gloria at a support program.
The treatments are vital for the distinct cases the Tilleys have to deal with.
“Remember the ‘Incredible Hulk,’ — that’s Justin. He’ll be covered in hives and be kicking and screaming and biting if his allergies act up,” Gloria said. “There can’t be any cologne in the house. We have three air purifiers. We don’t change detergents. We can’t use chemicals to clean.”
While the treatments have worked, they’ve come at a heavy cost to the family.
“The things we’re doing are very, very successful. (Gloria) gave up her teaching career because there are doctor’s appointments at least three times a week in Toronto, Rochester, Cleveland and Cincinnati,” Chuck said. “I’d say I spent $52,000 last year alone to help deal with Justin’s medical problems.”
The circumstances have altered the way things are done around the household during dinner time, adding to the financial burden. Gloria has to make everything from scratch.
“We have to do what is a rotation diet where they don’t eat the same thing every day. Their bodies have to rest,” Gloria said. “We rotate pork, beef, chicken. We have to watch what foods they’re allergic to and what they’ll eat. I bring a cell phone to the grocery store to ask companies what exactly is in there. If there isn’t a 100 percent guarantee — I can’t buy it.”
Even something as simple as a loaf of bread comes with an inflated price tag.
“It’s so expensive with the diet. A loaf of bread is normally $1.50. I pay $4 a loaf. It has to be organic. Then there’s the vitamins,” Chuck said.
There’s also the issue of supervision.
“There’s no way I can trust anybody to watch my kids. We have an awesome respite worker, but it’s not enough,” Gloria said. “We can’t get out of the house. There’s no air conditioning because of the allergies. Every single aspect of your life you have to look at. You can’t go to people’s houses. The most we can do is go to Fantasy Island, free movies, some outdoor activities and church.”
The severe costs have driven the Tilleys to the brink of financial ruin.
“It’s basically chaos and survival,” Gloria said. “There is no savings and most of it’s out-of-pocket. I can’t work because we have to look out for these children — we can’t depend on someone doing it for us.”
To help offset the costs, the Tilleys will hold a fund-raiser from 6-10 p.m. Thursday at The Pier, 325 Fuhrmann Blvd., Buffalo. Donations are $25. Silent and Chinese auction items, food, beverages and paper goods are needed.
While it will take the help of friends to help the Tilleys see a happy ending, Gloria and Chuck have learned to rely on two people — each other — through their trials.
“Family and friends turn away because they don’t know how to help. Luckily, I married the right guy,” Gloria said, further adding that she supports Chuck’s devotion to Tonawanda football. “I don’t ever want him to give up football. It’s the one little piece of him that he can still have.”
“Coaching football keeps me sane and gives me something to look forward to,” Chuck said. “It’s been me and Gloria and a lot of people who were your friends become scarce. They don’t know how to deal with it.”
Gloria’s childhood friend, Lisa O’Brien, is trying to help by organizing the benefit.
“Gloria and I started talking about (the fund-raiser). I don’t what else we can do for her,” O’Brien said. “I don’t know how she does it. I wish more people would understand. They’ve been in restaurants where people think they’re just bad children. People need to look twice instead of judging the situation.”
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