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Mother of Allentown boy waiting for heart transplant speaks out

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Mother of Allentown boy waiting for heart transplant speaks out


PHILADELPHIA – An Allentown boy is currently fighting for his life.

Larry Odom Jr. is now on the waiting list for a heart transplant, but for several months it looked like he wouldn’t even be considered. For the past 16 years, Larry has been getting by with half a heart.

“When I gave birth to him, they said that he had Left Heart Hyperplastic Syndrome. That’s when the left side doesn’t grow and it affects his lungs,” said Larry’s mother, Natacha Rodriguez.

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We met Rodriguez outside the busy Children’s Hospital of Philadelphia. It’s a place she and Larry have been calling home for the past three months, because Larry’s heart is starting to fail.

“They said, for 16 years, it basically gave up on him,” said Rodriguez.

Larry needs a heart transplant, and his mother applied for him to get one in September, but on Sept. 21 she got some devastating news. A letter from the hospital read, in part, “Larry is not currently a candidate for heart transplantation on the basis of concerns that Larry does not have adequate support structures in place to safely care for him after transplant.”

“When I got that denial letter I, I felt like I died. I felt like I couldn’t help him,” said Rodriguez.

Rodriguez said, after receiving the letter, she got desperate.

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“Me and him have the same blood type, so I figured why not? But they wouldn’t, they wouldn’t take my heart,” said Rodriguez.

Instead, she created a GoFundMe for her son, which has already raised $2,000.

We reached out to the hospital for a comment about Larry’s case on Oct. 24, but it declined our request. It did send Rodriguez a follow up letter, however, on Oct. 27, clarifying what “support structures” means, saying “A reliable transportation plan will be necessary to ensure Natacha is able to get back and forth to the hospital.”

We reached out a doctor who has been studying this criteria of “support structures” for years. She said these denial letters aren’t unusual.

“The best estimates that we have are from a national survey that was conducted about eight years ago that suggests that between 10 and 20 percent of patients are ruled out,” said Dr. Keren Ladin, an Associate Professor at Tufts University.

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Dr. Ladin said her research has led her to recommend hospitals stop using “support structures” as an exclusion criteria.

“What we found is that the requirements at transplant centers are not evidence-based, and they’re very, very high, and they do disproportionately disadvantage people of color, people who are lower income,” said Dr. Ladin.

People like Rodriguez, a single-mother who works as a home health aid. Worst of all, Dr. Ladin said “support structures” may not even tell us who will do the best following a transplant.

“It’s not predictive of outcomes like rejection, or hospitalization, or graph loss, and those are the outcomes we kind of care most about,” said Dr. Ladin.

Thankfully, on Nov. 17, Rodriguez received a letter finally admitting her son to the transplant waiting list. His fight is far from over, but Natacha said she’ll be there for all of it.

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“My plan is to be with my son until he gets his heart. Like I’m not going to give up on him,” said Rodriguez.





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Pennsylvania

As gun violence drops sharply in Pa., focus is on what’s working – WHYY

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As gun violence drops sharply in Pa., focus is on what’s working – WHYY


Continuing problems

Even as gun violence rates decline, gun reform advocates say there is much more work to be done.

Gun deaths and injuries cost Pennsylvanians $1,692 on average per person in 2019, according to data from EveryTown. More than 1,900 Pennsylvanians died by gun violence in 2021, with 181 being children and teenagers.

State Rep. Patty Kim (D-Dauphin/Cumberland) said lawmakers should have acted on gun reform a long time ago.

“We cannot see another life go away because we can’t get it together,” she said.

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Gun reform bills have stalled in the State Legislature this session. A Senate billintroduced by Sen. Vincent Hughes (D-Philadelphia/Montgomery) that would create a state research center for gun violence has awaited movement since January 2023.

A House bill establishing a gun violence task force in counties that surpass a firearm-related death threshold has not moved since March 2023. The ACLU opposes the task force bill due to the potential for Pennsylvania to prosecute more gun violence cases, even though more firearm deaths in the state are a result of suicide than homicide.

Two House bills, one aiming to track firearms sales and the other banning multi-burst gun modifiers, failed to pass by one vote in May.

State Sen. Vincent Hughes (D-Philadelphia/Montgomery) said as the State Legislature keeps gun reform “bottled up,” the state must fund organizations doing work locally.

“With the resources that this Commonwealth has, we need to be investing in organizations like yours and all the others that are around here that are doing the hard work but are doing it for nothing,” he said to Mariah Lewis, a gun violence survivor.

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Lewis, now a med tech at a personal care facility in Palmyra, was shot in the face by her son’s father in 2021. She lost her left eye and now uses a prosthetic. Her attacker was spiraling after experiencing difficulty finding employment with a felony.

Kia Hansard, co-founder of nonprofit Concerned About the Children of Harrisburg, said that her organization helps provide immediate employment to people coming home from state correctional institutions regardless of conviction. Since opening in 2017, CATCH has found 544 people permanent employment.

Lewis founded Eye Choose Me, a nonprofit focused on domestic violence and gun reform, in 2022. Two years after its first meeting, she is still helping to fund the organization from her own pockets.

Money is not the only thing that can buy safe communities, according to Lewis. She emphasized the importance of outreach strategies and speaking to vulnerable people on the ground.

“Conversations are free,” Lewis said. “You going out into the community is free.”

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CATCH co-founder Charla Plains said funding social services, including counseling services in schools, is integral to steering children away from gun violence. 

Shapiro’s budget would put $11.5 million toward after-school learning opportunities for children and $11 million toward building parks and improving shared spaces.

Carter acknowledged the importance of local organizations pushing for community connection because the Harrisburg police “just don’t have that trust.”

Philadelphia’s Citizens Police Oversight Commission reports 3 people killed by police from January to May 2024.

“When we are talking about gun violence, we cannot ignore the fact that gun violence also includes law enforcement violence,” Kia Hansard said.

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Shapiro’s budget would invest $16 million to create four new Pennsylvania State Police cadet classes in an effort to aid understaffed local police departments.

Former Gov. Tom Wolf approved the Gun Violence Investigation and Prosecution Grant Program, which funds the investigation and prosecution of firearm-related violence. The program was funded by $50 million in federal American Rescue Plan Act money.



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More funding could be coming to a Pa. affordable housing program

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More funding could be coming to a Pa. affordable housing program


Shapiro’s proposal would not increase PHARE funding to $100 million overnight, instead adding $10 million to the ceiling each year until 2028. He also proposed adding $50 million to the Whole-Home Repairs Program, a separate grant for low-income homeowners to address problems like leaking roofs, unsafe electrical wiring, and broken furnaces.

Shapiro also pitched scrapping PHARE’s current funding formula in favor of what his budget proposal calls a “guaranteed” transfer. Bonder noted, the current formula sometimes results in PHARE receiving less money than its cap allows. The guaranteed transfer would mean funds reliably hit the cap every year.

This higher sum would be overwhelmingly funded via the state’s realty transfer tax, one of several funding sources for PHARE, along with natural gas impact fees and money from the National Housing Trust Fund. Money from the transfer tax goes to several areas of the budget, including the general fund, and Bonder said the state’s current surplus means there is spending flexibility.

State House Democrats back Shapiro’s proposal as written, according to their spokesperson, Beth Rementer. But state Senate Republicans would need to be won over in budget negotiations.

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The state budget was due June 30, but lawmakers are still haggling over the final package.

Asked for comment, a spokesperson for state Senate Appropriations Committee Chair Scott Martin (R., Lancaster) responded, “We do not have an update to share on that issue at this time.”

State Sen. Elder Vogel Jr. (R., Beaver), who sponsored the legislation over the past two sessions, is somewhat optimistic.

“We’re hopeful that we’re going to see a cap increase,” Vogel’s communications director, Abby Chiumento, said. “With negotiations ongoing, we don’t know what’s going to be in the final budget.”

PHARE was signed into law in 2010. The legislation that led to the program’s establishment received near-unanimous support in both chambers.

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The Pennsylvania Housing Finance Agency, which is affiliated with but not run by the state, chooses the recipients of PHARE grants. The recipients range from nonprofits to county governments.

The program “allows municipalities and localities and counties to figure out how they can best use the dollars,” said Allegheny County Executive and former Democratic state representative Sara Innamorato. “For us, it’s addressing homelessness, but if there’s a community that wants to create more first-time home buyers, they can design a program around that.”

Innamorato, who sponsored the PHARE cap increase bill in the state House when she served there, argues more funding is overdue.

“There’s many projects that are worthy that go unfunded every year,” she said. “We could always use more money to invest in addressing housing needs.”

Spotlight PA is an independent, nonpartisan, and nonprofit newsroom producing investigative and public-service journalism that holds the powerful to account and drives positive change in Pennsylvania.

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Pennsylvania Sen. Bob Casey stands by Biden, says voters will decide on issues, not bad debate

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Pennsylvania Sen. Bob Casey stands by Biden, says voters will decide on issues, not bad debate


PHILADELPHIA, PA – SEPTEMBER 21: Senator Bob Casey (D- PA) addresses supporters before former President Barack Obama speaks during a campaign rally for statewide Democratic candidates on September 21, 2018 in Philadelphia, Pennsylvania. Midterm elect

Pennsylvania Sen. Bob Casey said Monday that President Joe Biden is able to run a strong race and serve a second term in the Oval Office, standing by his close ally in the critical battleground state following a disastrous debate performance that’s prompting some national Democrats to question his candidacy.

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Casey had stayed quiet about Biden’s performance before making his first public appearances since Thursday night’s debate, including a campaign stop in Scranton, Pennsylvania, the blue-collar hometown that he shares with Biden and that the president name-checked in the debate.

Casey, who is also seeking reelection in November, acknowledged that Biden had a bad debate, but also suggested that voters have bigger concerns.

“He had a bad night and debate, but I think people know what’s at stake,” Casey told reporters, arguing that voters are more concerned about issues like abortion, labor and voting rights and the fate of democracy.

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“I’ve been at this a while, and I know his work,” Casey said. “And I also know that the American people and the people of Pennsylvania are going to focus on these races in the way that I just outlined.”

Casey would not elaborate on why he thinks Biden is fit and said he doesn’t worry that Biden’s debate performance would affect his own race for Senate.

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They lead the ticket together in a battleground state that is critical to the Democrats’ fortunes in holding the White House and Senate. No Democrat has won the White House without Pennsylvania’s support since Harry S. Truman in 1948.

Casey’s opponent, former hedge fund executive David McCormick — like other down-ballot Republicans — has seized on Biden’s performance, accusing Casey of lying about Biden’s fitness to be president and suggesting that Biden’s Cabinet should consider forcing him out of office, using the 25th Amendment.

The president’s debate performance last week left many donors, party strategists and rank-and-file DNC members publicly and privately saying they want the 81-year-old Biden to step aside to allow the party to select a younger replacement at the Democratic National Convention in August.

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Biden spent the weekend trying to stabilize his campaign, then gathering with family as previously planned at Camp David, where they discussed the path forward.

The president and his team characterized his debate performance as an outlier, arguing one bad night shouldn’t define him or jeopardize the election.

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Biden told a Saturday fundraiser on Long Island that he didn’t have a “great night” at the debate, but that former President Donald Trump’s falsehoods and reminders about the January 6, 2021, insurrection had resonated more with undecided voters.

McCormick, for his part, hasn’t commented on a blatant falsehood Trump told during the debate about the Jan. 6 attack on the Capitol by his supporters. Trump falsely claimed the attackers were “a relatively small number of people that went to the Capitol and in many cases were ushered in by the police.”



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