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Richford native Jake Elkins is surviving one day at a time

RICHFORD — Jake Elkins’ outlook on life is pretty positive for a guy who’s about to undergo his second open-heart surgery — his 10th surgery in total — at age 32

“I have my moments. I’m not perfect by any means. I’m not full of myself. I’d say I’m pretty mellow, I’m pretty humble,” says Elkins.

Elkins grew up in Richford and was born with a condition called pectus excavatum, otherwise known as an inverted sternum. Elkins says that he was so young the surgery didn’t work.

“We really pushed to try to have corrective surgery to fix that, so I would have somewhat of a normal life,” he said.

“As I got older, it grew back in,” he says.

At age 4, he says his adenoids swelled up in his sleep and he couldn’t breathe. But things really got weird when he was 16 and his spleen ruptured without warning.

“Doctors even asked, you know being a 16-year-old kid, they thought I had maybe been hanging out on a four-wheeler and drinking with friends and got into an accident. It’s usually due to an impact. But there wasn’t,” he says.

Elkins spent four hours in the ER before being rushed into emergency surgery.

“My whole torso was filling up with blood. Every time I would sit up I would start to pass out from the blood loss,” he said.

After the ordeal, doctors told Elkins that he had lost anywhere between one-third and half of his blood.

“I went back to normal. I went back to my average life,” he said.

That normal life included meeting his wife Jessica on a blind date that never happened.

“I’d actually started seeing one of her friends that didn’t work out. We reconnected a couple years later and hung out. She’s my rock,” says Jake.

“We realized we were the blind date that never met. With Jake it’s for the most part, always been easy! I know it sounds corny but he truly is my best friend,” says Jessica.

Jake and Jessica had a daughter that they named Lily in 2010.

The first heart surgery

During a routine pre-employment physical for a job interview, doctors discovered a heart murmur in Jake.

“He had me breathe out and hold my breath and he could still hear it, which is not normal. He sends me to a heart specialist, which is where they could see it,” he says.

“It” was an 8.6 cm aortic aneurysm. Doctors normally operate at 5 cm.

“I’ve had many surgeries but ... you’re talking about the heart, that was what was scary,” he said.

He was told that without open heart surgery, Jake would live 3 to 6 months.

“I didn’t believe him because he’s always a smart ass. I just remember sitting there listening to the doctors talk and thinking ‘I don’t want to do this without him.’” she says. “This is something you hear about other people going through. You never imagine yourself experiencing it.”

Jake’s surgery lasted about six hours and included a blood transplant. He spent eight days in the hospital and four months recovering at home.

A rare disease

Doctors still thought it was strange that a person of Jake’s age could have an aneurysm and wanted to conduct more tests. “They recommended genetic testing. Medicaid didn’t want to cover the bill — which was $3,000- $5,000 — because they didn’t deem it necessary. There wasn’t any sign of this in my family before that.”

Things had also returned to normal again. He finally got another insurance company to approve the testing.

During the testing, Jake was diagnosed with Loey’s Dietz Syndrome (LDS), a genetic disorder affecting connective tissue.

Dr. Duke Cameron is one of the foremost experts in LDS. He also happens to be Jake’s doctor. before coming to Mass General, Cameron spent over 30 years at Johns Hopkins where this original disease was described in 2005.

“I was the surgeon on most of the original cases, so that’s why we were linked up,” he says.

Cameron says that the disease is similar to another called Marfan’s but is much worse.

“People develop aneurysms and have these ruptures and they can have it much younger in their lives. That’s why it’s very important that doctors know about these diseases,” he said.

“There’s a 50% chance that you will pass this on to any child that you have. So, we had my daughter tested and she doesn’t have it,” Jake says.

Two years after his heart surgery, the ball of Jake’s femur suddenly fell off. It’s a condition called Epiphysis.

“I was like ‘somethings got to give... why us?’” says Jess.

Jake had surgery and after four months on the donor list he had a second surgery to place the donor bone in his femur.

Another surgery scheduled

Jake and Jess managed to buy a house in September. A little less than a month after they purchased the property, Jake says he noticed something strange and decided to visit the doctor, where he was diagnosed with testicular cancer.

“All of the ‘what if’s’ ran through my head. It was a very silent car ride home. What made it worse was the week he was diagnosed and had surgery was the week of the cyber attack,” says Jess.

Ransomware attacks on the UVM Health Network, as well as COVID-19 prevented Jake from being able to get in for scans right away. When he finally did make it into the hospital, doctors found another enlargement of his aortic root, this time in the aortic arch.

In the meantime, Jake had surgery for cancer but doctors say he has a “Ticking time bomb in his chest.” Jake will be going in for a second open-heart surgery at Massachusetts General Hospital on April 8.

“We found out that had we known I had LDS prior, they would have replaced the aortic arch. That part usually ends up dilating within five years. So, originally they just replaced the ascending aorta that was affected,” says Jake. “I’ve had people talk to us. There are people who say, ‘I can’t believe how you guys hold it together,’ but to me this is my life.”

This will be Jake’s 10th surgery.

“Honestly, I’m burnt out. It is mentally draining! But you can’t stop.... We manage and we always figure it out. We have a great support system with family and friends so that always helps us too,” says Jess.

Cameron says that there is a 95% chance of survival but the surgery is also not without expense.

“These operations — for people who don’t have insurance — it’s almost out of their reach. There are a lot of people involved in making sure this goes smoothly. That’s why it’s so expensive,” says Cameron.

Community support

On Saturday, Hemond’s Sugar Shack in Richford held a surprise breakfast with the intention of donating all the money raised to someone deserving. Owner Tracy Hemond has known Jake and his family for years.

“When I hear about people struggling with illnesses and not being able to financially afford all that comes along with them, it’s very heartbreaking,” she said. “My first impression of Jake’s struggle was, ‘Wow, he’s so young.’”

The breakfast raised $1,300 for Jake’s cause.

“I’m not surprised,” says Hemond. “I have watched as well as been part of this community giving back time and time again.”

Jake says that he was blown away by the support and that he didn’t even know about the benefit. He was too busy throwing a shotgun wedding.

“We were trying to plan our wedding just in case we didn’t get the opportunity, in case heart surgery didn’t go as planned. We wanted to seize the moment,” says Jake

Jessica says no one hesitated when they mentioned that they wanted to take the plunge.

“We have been together for 12 years and we have tried to plan our wedding so many times and something has always come up or gotten in the way and this time we just decided to do it!” she says.

Jake and Jessica also have a GoFundme which has raised $5,145 on a $1 goal.

“I’m not worried at all. Sometimes, I just kinda go numb. My brain shuts off. If I’ve learned anything at all from this though ... it’s to be thankful. Just survive one day at a time.”

'Let's use our outdoor voices': Local Vermont educators protest pension proposal

ST. ALBANS — Even the wind couldn’t blow them away. Over 100 educators and staff dressed in Maple Run red flocked to an intersection near the Collins Perley Sports Complex on Tuesday hoisting massive signs calling for legislators to drop a proposal that educators say would hamstring their pensions.

“We need to think of other ways,” said BFA St. Albans social studies teacher Mike Campbell. “They say ‘oh no, we can’t do a tax on the rich, the governor will veto it.’ Well, make him veto it! Make him stand up and say this is what he believes. Then when election time comes, Vermonters have a choice.”

Scores of educators lined the highway hoisting signs emblazoned with “Fulfill your promise,” “Vermont teachers deserve a dignified retirement,” and “Tax the rich, not teachers.”

Campbell expressed hope that pressure on the proposal would change the nature and contents of it as it made its way through the legislature. He stressed that educators had to be there every step of the way to stand up for the promise that was made to them when they agreed to be a teacher.

What’s in the proposal?

The House Government and Operations Committee’s proposal suggests significant changes to Vermont’s current educator retirement system.

The proposal, which was submitted by committee Chair Rep. Sarah Copeland Hanzas, D-Orange, and Vice Chair Rep. John Gannon, D-Windham, does not apply to workers who are at or within five years of their retirement.

For everyone else, however, the proposal would increase base employee contributions toward retirement from 5% to 7.25% of gross salary for teachers, and increase the annual benefit on the average of an employee’s seven consecutive years of salary.

Currently, it bases it on the average of three consecutive years.

Additionally, the proposal would increase the pension vesting period to 10 years, up from the current five. The proposal also eliminates the possibility of early retirement at age 50 for educators with 20 years of service.

During a press conference Tuesday, Gov. Phil Scott said the proposal is a concept at this point, and gave credit to the House and the lieutenant governor for bringing the issue forward. He said the state’s current $5.7 billion unfunded liability due to the current pension system is a problem where “ignoring it isn’t going to make it go away.”

“We’ve seen the warning signs for decades and ignored them,” he said. “… It’s not sustainable the way it is right now. We spend hundreds of millions of dollars on this obligation, but we can’t keep up.”

What do local teachers think?

Campbell referenced the “much better” pension plans of bordering states, and said the passage of such a proposal could result in an exodus of Vermont’s teachers.

“We’re going to lose good teachers,” Campbell said. “They’re going to go where they can get a dignified retirement. So you’re going to see a migration out, and the veteran staff are going to leave out of fear.

“if you have people who have to work until they’re 67, you have budgets being broken, because they’re at the top of the pay scale.”

Campbell, who has been a teacher for 22 years, said new teachers sometimes bring in half the salary of veterans and can be considered desirable because of their lower paycheck.

Just like their energy, ideas and innovation, he said.

“This breaks a promise,” Campbell said. “When you can get a better pension system at the end of the years that you give to the community, you’re going to go where the best financial position is.”

With the proposed new regulations, Campbell said retired teachers would most likely have to get part-time jobs to survive.

“(Public service) is part of the fabric of what we are (as Vermonters),” Campbell said.

St. Albans Town Educational Center first- and second-grade teacher Lisa Curry recalled the additional efforts that teachers took to support and care for their students throughout the events of the past year, including quarantining multiple times at a moments notice and still find a way to reach and connect with her students.

St. Albans Town Educational Center special education teacher Sarah Biggie said the proposal, if passed, would steer one-time educational hopefuls in another direction and create less incentive to become a teacher.

“We want young people to go into teaching,” Biggie said. “This won’t do that.”

Lt. Governor Molly Gray issued a statement in support of educators, and called for further work to be done before a more developed proposal was considered.

“This proposal represents a broken commitment to our teachers and employees made at the time of hiring. Vermont’s teachers, in particular, have made extraordinary sacrifices during this pandemic, risking their health and safety to educate our children,” Gray wrote. “I am concerned that the proposal does not reflect the value we place on their tireless work, dedication and commitment.”

“We all know we’re never going to get rich teaching, but we’re going to make a middle-class income,” Campbell said. “Across the state this is going to lead to teacher shortages--what young person would get into this business that way?”

Kris Lantz / Kris Lantz/Staff Writer 

Franklin Northeast Supervisory Union is looking to move from its offices in downtown Richford. The Richford Selectboard calls the potential move “devastating.”

1. ‘Devastating’ move: Richford officials worry about how FNESU moving its district office could impact the town. Page 4

Cameron Paquette / Courtesy ORCA Media  

Vermont Health Commissioner Dr. Mark Levine speaks during Tuesday’s press conference updating the public on the state’s response to the COVID-19 pandemic.

2. Vaccine news: This week, people of color in Vermont, as well as parents of children with high-risk conditions, became eligible for vaccination. Page 15

Courtesy Todd Raleigh  

Cal at the plate with the Seattle Mariners this spring in Arizona.

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