Heartbreak and vigilance

Jonathan ’94 and Neely Agin deal with the loss of their 5-year-old daughter and fight social security fraud

By John Walsh

It’s every parent’s worst nightmare. It’s unfathomable for those who’ve thankfully never experienced such pain and grief. The loss of a child turns the lives of parents upside down and changes them forever. The lives of Jonathan ’94 and Neely Agin of Arlington, Va., will never be the same. Not only are they dealing with the death of their 5-year-old daughter, Alexis, they subsequently were forced to fight Social Security fraud when her identity was stolen soon after she passed.

After Agin graduated from John Carroll – he majored in communications and minored in history – he earned a law degree from Case Western Reserve University in Cleveland, became a civil defense attorney, and moved to D.C. in 1999. While at CWRU, Agin met his future wife, Neely Schonfeld. After a few years in the nation’s capital, the Beachwood, Ohio, native started his own Washington- based firm, Taylor Sylla & Agin, LLP, in 2004, focusing on cases involving the defense of medical malpractice, general liability matters, auto torts, construction cases, and insurance coverage claims.

About two years later, Neely gave birth to the couple’s first child, Alexis, in 2006. There was nothing abnormal about Neely’s pregnancy or Alexis’ birth. Alexis was growing and healthy. Then in December 2007, Alexis vomited in the middle of the night, which continued on and off for the next few months. In early April 2008, the Agins noticed their daughter’s right eye turning inward, so, on April 10, they took her to a pediatrician, who suspected it might be a case of lazy eye but recommended Alexis get a CAT scan to rule out other potential causes. Neely and her mother took Alexis to get the scan, the results of which stunned them. Doctors saw a mass on her brain stem, and she was admitted to the hospital.

The Agin family

“I was in Richmond when Neely called me with the news,” Jon says. “I rushed to the hospital immediately.”

An oncologist diagnosed the mass as pontine glioma (DIGP) and told the Agins it was inoperable and terminal, giving Alexis six to nine months to live, maybe a year with standard treatment. Because of the location of the tumor and the fact it wasn’t a solid mass – it was like particles of sand strewn throughout grass – there was no way to surgically remove it.

“We just had to treat it,” Jon says. “Radiation was the only thing that had been shown to slow the growth of the tumor.”

Alexis went through 30 treatments of standard radiation, which shrank the tumor temporarily, but it began growing back a few months later.

In March 2009, Alexis started another round of treatment, and by December 2009, she had three more MRIs, the last of which showed slight growth of the tumor. From then on, the 3-year-old had an MRI once a month. She was asymptomatic from June 2008 to February 2010, which is very rare for someone with DIGP. For the next phase of treatment, the Agins took their daughter to Children’s Hospital of Philadelphia for a month and then to Memorial Sloan-Kettering Cancer Center in New York for an infusion and oral treatments for six months. While receiving treatment at Sloan-Kettering, doctors discovered a bad bleed inside the tumor, and Alexis’ condition deteriorated. She died Jan. 14, 2011, two weeks shy of her fifth birthday.

“Most kids diagnosed with DIGP are worse off – they can’t swallow or walk,” Jon says. “Alexis is considered a long-term survivor of the disease.

“While nothing could have prepared me for dealing with Alexis’ diagnosis and loss, my professors at Carroll instilled in me the ability to question and push her doctors to ensure she obtained the best possible care,” he adds.

Dealing with the agony
The experience of dealing with Alexis battling cancer altered the Agins for life.

“It was all consuming and a life-shaping experience,” Jon says. We won’t get over the loss of our child. We don’t want to. That pain allows us to go back and connect with our child.”

The life-changing experience also affected the Agin’s son, Gabriel, who was two weeks
old when Alexis was diagnosed.

“Getting the news that I was pregnant with our second child just after the news of Alexis’ illness was almost too much to handle,” Neely says. “We were so grateful for the blessing of a baby, but at the same time, we were falling apart over the possibility of losing Alexis.”

Gabriel was born in December 2008, just a few weeks after the Agins learned Alexis’ tumor was growing again.

“As a result, he took second seat for the first two years of his life,” Jon says.

Work life, too, was thrown out of whack.

“I did zero business development and didn’t want to engage in small talk,” Jon says. “There were days when I would go into work and sit in front of the computer and stare at it for two hours and do nothing. Yet work was a good diversion from what we were dealing with. It wasn’t until late February 2012 that I started focusing on my business. It took a year and a half to feel like I wanted to get back to work.”

During Alexis’ ordeal, spirituality became a mechanism of hope for the Agins, who are Jewish. They talked to a rabbi for comfort and hope and received a prayer scarf from the Dali Lama.

“I was open to everything in the spiritual realm and the world of science,” Jon says.

Neely was working full time before Alexis became ill. She’s been with the international law firm Fulbright & Jaworski L.L.P. since 1997. The New Jersey native returned to work after Gabriel was born, stopped working in October 2010, and returned full time in March 2011.

“Fulbright was unbelievably supportive,” Neely says. “They made it possible for me to stay home with Alexis and focus on her treatment. I got to spend invaluable time with her, which I will cherish forever.”

After the loss of their daughter, the Agins were forced to deal with Social Security fraud after someone stole their daughter’s Social Securty number for tax purposes.

In May 2012, the Agins welcomed another son, Trevor, to their family. As their family grows, it’s important to continue Alexis’ memory.

“We talk about her incessantly because we don’t want Gabriel to forget her,” Jon says. Gabriel plays with her toys and asks to hear more stories about his sister. It’s very important for us to make sure Gabriel has a connection to Alexis. It’s up to us to tell him what his sister was like and hopefully inspire him.”

The Agins, who run the Washington, D.C., chapter of a cancer research foundation called The Cure Starts Now, spend time raising awareness and funds for pediatric brain cancer research. They created a 5K race called the National Race Against the Odds, which grossed $55,000 and involved 600 runners the first year.

Aside from their work and fundraising efforts, the Agins find themselves in awkward situations in which people don’t know what to say to parents who’ve lost a child.

“I’m happy to talk about my child, but a lot of people don’t want to talk about it,” Jon says. “I have a blog I wrote (caringbridge.org/visit/teamalexis) because I wanted to let people know what was going on and not have to answer questions and phone calls all the time. The blogging has been cathartic.

“It’s been a difficult road since her passing, though,” he adds. “Not all of our friendships are the same. Some people can’t deal with it.”

Another related battle
As if dealing with the death of their daughter wasn’t crippling enough, the Agins were thrown into another unforeseen battle – rectifying the fraudulent use of their daughter’s Social Security number. After filing their 2010 tax return, the Agins received a call from their accountant, who alerted them about a problem – it couldn’t be filed electronically because someone used Alexis’ Social Security number to file a tax return. As a result, the Agins had to prove Alexis was their daughter and she was a dependent.

“We never found out who did it,” Jon says.

Subsequently, the Agins were part of news stories about Social Security fraud stemming from the death of a child in the family. As a result of those stories, about 40 other families came forward to discuss the fraud they were forced to deal with.

“We know a lot of people in the childhood cancer community who have dealt with this type of fraud,” Jon says.

After investigating, Jon found that people’s Social Security numbers can be accessed easily on genealogical websites such as Ancestry.com. So he contacted the company and told it to take down his daughter’s information immediately, but it responded with lawyers saying it has a right to post such information. The Agins learned the U.S. Social Security Administration maintains the Social Security Death Master File that includes 90 million records that are updated weekly. The file includes deaths that have been reported to the agency throughout the past 75 years by survivors, hospitals, funeral homes, and state offices. The listings include names, complete addresses, Social Security numbers, and dates of death. The agency didn’t make the information public until 1980, after a legal ruling required the data be disclosed. Although it’s not comprehensive or 100-percent accurate, the list is considered the most current record of deaths nationwide. The SSA transfers the information to the Department of Commerce, which can sell it to anyone.

“The purpose of the list is to prevent fraud, such as collecting benefits, but the problem is that the list is distributed to anyone with a computer,” Jon says.

The Agins contacted their congressman, Jim Moran (D-Va.), and explained their situation. He helped them straighten out their tax return.

“From there, looking into the death master index stalled,” Jon says.

So, Jon met with Rep. Sam Johnson (R-Texas), who had been quoted in news articles about the death master file. Johnson proposed to close the sale of the master death file and asked if Jon would testify in front of a six-person panel on the Social Security Sub-Committee of the House Committee on Ways and Means Feb. 2, 2012. From there, the committee was supposed to move ahead with a full House hearing, which happened this past May. Johnson introduced legislation to end the public disclosure of the master file altogether, and Sen. Bill Nelson (D-Fla.) proposed a bill that would keep death records private until three years after a person died. Since that time, a bill sponsored by Johnson has been in limbo.

“Failure to take steps to keep the death master file from being publicly accessible is costing taxpayers more than a billion dollars a year,” Jon says.

The Agins are frustrated with the lobby effort for childhood cancer and Social Security. More than 100 families that Jon knows about have been victimized by Social Security fraud.

“I think it’s more,” says Jon, referencing a savvy researcher in Florida who submitted 750 tax returns using this type of fraud.

Genealogical websites are part of the problem, according to Jon. An annual subscription to the Social Security file, with unlimited searches, can be bought for $995. Genealogy websites make the data available at little or no cost. As a way to stop that and prevent fraud, the U.S. government started publishing a master death list. Genealogical groups say they need the information to conduct research and help military personnel connect with deceased family members.

“The problem is with 1 percent of the people buying the master death file,” he says. “Genealogical websites are the only ones who publish the list on the Internet. This bill, H.R. 3475 Keeping IDs Safe Act of 2011, would stop sales of the death master index. Fraud is still happening, and by the time a family files their tax return, it’s too late.” JCU

To read Jon Agin’s blog about his daughter, Alexis, visit caringbridge.org/visit/teamalexis. He also blogs for the Huffington Post.


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