July 18, 2012
A hunger that cannot be fed
A chronic, debilitating disease strikes one young boy, inspiring a whole community
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Those first four months of kindergarten were the best time of his life thus far, according to his parents. The entire family was hopeful, glad to be able to offer Aaron a childhood with Jewish values. At that time, hopeful he could begin to have a more typical life, they also enrolled him in a program at a rehabilitation center, with the goal of removing the feeding tube. More than anyone, Aaron himself wanted the chance to eat and play on the playground with his friends without constantly having to carry his feeding apparatus in a backpack.
To that end, Aaron was enrolled in a 19-day feeding program that, as it turned out, instead of forwarding his progress, caused him to contract a gastrointestinal infection and suffer an episode worse than any before.
“We didn’t even know if he would be coming home with us at the end of the program,” Daniel said. “The trauma done to him was unbelievable. This was a kid who came in believing he was going to go home to finally eat lunch every day with the other kids at school. It wasn’t just physical damage they did to him, but what happened to his spirit.
“It was the very first time,” Gudrun said, “that I saw defeat in my son’s eyes.”
Aaron now goes to his bedroom to be alone when his symptoms begin. He asks that the lights be turned off and the room be kept absolutely quiet. His most recent episode of CVS lasted nine days.
The downturn in Aaron’s health has thrown the entire Brock family’s life into upheaval. Gudrun, who operates a small business as a personal organizer, had to put her work aside as Aaron’s health began to decline. The recent loss of spirit, inability to gain weight, the constant retching, demanded that both parents attend to his needs at home 24 hours a day, focused on finding immediate medical, social and financial solutions.
But Aaron’s baseline health has been slowly improving recently, and Daniel — who once worked as an executive in the film-music industry, as well as working in international business development and renewable energy — is now urgently look for work. The demands of health insurance, medical bills and mortgage payments have been piling up, and foreclosure proceedings have begun on their home while their day-to-day lives have been consumed with the minutiae involved with bringing their son back to health.
Just when things seemed to be at their worst, however, significant help began to come to them through a fortuitous encounter at a bar mitzvah. There, Daniel and Gudrun were seated next to Wilshire Boulevard Temple’s Cantor Don Gurney and his wife, Nancy, and in the course of conversation, they told their story about Aaron and his CVS. The Brocks had been temple members for quite some time, yet the Gurneys were unaware of the family’s dire situation.
The Gurneys immediately responded by encouraging the Brocks to seek assistance. Nancy Gurney told Gudrun: “You are part of a community — you have a school and a temple that does not know what is really going on. You have to come in, meet with your rabbi, explain what is going on, and get help.”
Immediately, Steven Leder, senior rabbi at Wilshire Boulevard Temple, put the Brock family in touch with Chai Lifeline, which helps families with seriously ill children. It provided them with moral support and assisted in finding appropriate therapists. Clarissa, Aaron’s 12-year-old sister, was given a scholarship to attend Camp Hess Kramer this summer. Parents within the school community began to pitch in with Mitzvah Meals three times a week.
“We, like a number of families in distress, had pretended we were OK and presented ourselves as a functioning family,” Gudrun said. “However, once the wheels started turning, we gained some of the assistance we really needed. People were actually doing things, unexpected things — donating tickets to Disneyland, inviting us to Shabbat dinner. But what impacted us the most was the moral support — the phone calls, the e-mails, the concern, the thoughtfulness, the appreciation for Aaron.”
The Brocks continue to do as much together as a family as they can. Among their favorite activities is cooking together. When Aaron is feeling well enough, he loves to cook meals with his mom. He loves his mother’s short ribs, and when he is able to eat, he wants short ribs at breakfast, lunch and dinner. Indeed, Aaron’s desire to eat remains, even though sometimes his body simply can’t retain the food. But when he can, he will eat even just a little bit. And, especially, he still loves the flavor of food.
Clarissa, too, joins in to help around the house and encourages her brother to eat. “He loves Factor’s skirt steak,” Gudrun said, adding that Suzee Markowitz, a co-owner of Factor’s Deli and a family friend, “is always happy when Aaron wants to eat it. Of course he loves Suzee, too,” she said.
Nevertheless, even on a good day these days, Aaron averages only 10 percent of his caloric intake from eating food. Yet, he loves to choose ingredients from the fridge and chop onions, peel cucumbers and saute vegetables. Sometimes he’ll wave his hands over a pot or pan, just to get a smell into his nose.
The situation is still dire for the Brock family. Gudrun notes that while the outpouring of help has been incredible, Aaron’s condition continues to be unstable, and the family’s financial situation remains very precarious; there is even talk of having to declare bankruptcy.
“It has come so far that things around us are falling apart. We have nothing left. We don’t know what the next day will be like,” Gudrun said.
Yet, through it all, the entire Brock family is looking toward the future. Gudrun hopes one day to use her experience dealing with a child with CVS to help others in similar situations. She said that just thinking about how she might help others keeps her motivated and inspired.
“I do know that Aaron came to us because he is here to teach us something,” Gudrun said. “I do believe that. I have learned a lot, and I am grateful. It has made me stronger. And Aaron is worth it. I would not do anything less, not a bit.
“And frankly,” she added, “there has got to be a time when things will be better.”
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