Vernon Hills boy inspires Northbrook grandmother to get political
Derrick Brown is a 4-year-old boy from Vernon Hills who always wears a smile despite living with a disease that can randomly create life-threatening tumors.
Because of Derrick’s ongoing courage, his grandmother Geri Greenberg traveled from her Northbrook home to Capital Hill this month and lobbied Congress for continued financial support for research into tuberous sclerosis.
According to the Tuberous Sclerosis Alliance, an advocacy group for which Greenberg volunteers, the disorder causes non-malignant tumors to form in various organs, but primarily in the brain, eyes, kidney, skin and lungs.
The organization says seizures, developmental delays, intellectual disabilities and autism are among the leading challenges.
While still a fetus, the doctors discovered a tumor in Derrick’s heart and a cardiac team was standing by when he was born in 2009. A transplant was not needed, but Greenberg said her grandson was still kept in intensive care for his first month.
Shortly before his first birthday, Derrick was already in the hospital with complications when his heart went into arrest. Greenberg said the boy died in his father’s arms, but doctors were able to revive him and soon installed a device that combines a pacemaker and defibrillator.
A tuber — or a potato-like nodule that calcifies with age — was later found in Derrick’s brain, which explained the heart complications. The tuber can cause abnormal growths at any time.
But Greenberg said doctors told her family the boy’s heart may not be the only problem going forward.
‘Maybe I can indirectly help’
Derrick’s four years have come with breathing constraints, seizures and continued cardiac struggles, Greenberg said/
“For people who go through something like this, they can go one of two ways: be fearful and hate everyone around them, or say ‘I’m here, I love everything about the world,’” she added. “Derrick is the second one.”
Derrick has not had a seizure in about a year, but he continues to have speech therapy and physical therapy once a week. Greenberg said Derrick has a chance to catch up with kids in his original grade level if his tuberous sclerosis remains subdued.
But the disease’s unpredictable nature is what led Greenberg to take action on behalf of her busy daughter and son-in-law.
“Mom and dad are incredibly busy,” Greenberg said. “Life is hectic when you both work and have two healthy children, let alone with a special needs child. I know I can’t do anything directly to prevent potential problems in the future, but maybe I can indirectly help him.”
Greenberg now chairs the Tuberous Sclerosis Alliance’s Chicago branch, and in that role she worked with a team to lobby Congress for money to research the disease.
The U.S. military does extensive research on brain trauma, and Greenberg said some of that work overlaps with Tuberous Sclerosis research. Because of the similarity, Congress has devoted more than $53 million toward shared research since 2002.
Greenberg and her team spent weeks calling Congressional offices trying to schedule appointments so they could share their stories.
The nonprofit is asking for this year’s $6 million research appropriation to be renewed in fiscal year 2015-16, and representatives from Pennsylvania and California sponsored a “dear colleague” letter supporting that budget request.
After scheduling appointments with representatives and senators who were responsive, the small teams of families traveled to Washington D.C. on March 5 to share their stories and ask for signatures on that floating letter.
“Geri (Greenberg) has done a great job running our Chicago branch,” said Christen Bell, communication and outreach coordinator for the Maryland-based Tuberous Sclerosis Alliance. “She is especially good at organizing educational programs and support gatherings for families. She also did a pretty outstanding job in her first trip to Washington.”
Greenberg’s team met with aides from Senators Mark Kirk and Dick Durbin, and aides from Congressmen Brad Schneider, Peter Roskam and Adam Kinzinger.
“It took a lot of phone calls over the weeks to lock down these appointments,” Greenberg said.
All standing together
Congressman Randy Hultgren of District 14 was the only elected official to meet the team in person. Greenberg convinced Beach Park residents David and Julie Scroggins to join the team, since they live in Hultgren’s district and are battling the disease in their family too.
“Everyone knows the budget pie is shrinking and all funding questions come down to priorities,” Hultgren said in a written response to the Pioneer Press. “I am a firm believer in long-term budgeting which encourages basic scientific research — the kind of research that can eventually lead to cures for diseases like tuberous sclerosis.
“Until Congress begins to fix our deficit problem, continually expanding mandatory spending programs will crowd our discretionary programs,” he continued. “We must fix our mandatory spending to get back to stable long-term research budgeting.”
Hultgren praised the families for talking about their intimate struggles with a complete stranger, and encouraged them to keep raising awareness.
“The trip confirms to me that these are real people,” Greenberg said of Hultgren. “I feel like we had his genuine interest and access to his heart.”
Greenberg and her volunteers are now building a schedule for calling local offices to remind Congressmen to sign the “dear colleague” letter when it comes in Chicago.
“I feel much better being proactive than waiting around hoping nothing else happens to Derrick,” Greenberg said. “I’m blessed that he isn’t in worse shape, but we all stand together regardless of the severity.”
Though it was just her first step, Greenberg said she’s not opposed to returning to Washington next year, or to new political action.
The next big task for the Tuberous Sclerosis Alliance is organizing the May 31 walk for a cure fundraiser in Westmont. In addition to helping families unite and cope together, Greenberg said she may also invite politicians so they can see all the families first hand.
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