After losing one child, family struggles to afford heart surgery for another

CLEARWATER

Omarlyn and Joe Jensen are enduring a parent's worst nightmare, plus some — the recent death of one child and the discovery of a life-threatening illness in the other.

The Jensens, who live in Lithia, have suffered through their 3-year-old son, Eli, dying last November of interstitial lung disease, and their 17-month-old daughter, Elisse, is scheduled to have heart surgery Sept. 13 at Massachusetts General Hospital.

These are tough times as well for Omarlyn's parents, Dunedin Blue Jays coach Omar Malavé and his wife, Evelyn, who live in Clearwater and raised Omarlyn here.

They are still reeling from Eli's death.

"I can't look at pictures of my grandson," Malavé said. "It breaks me apart."

Major financial difficulties have added to the young family's burden of grief.

Just last month, Joe Jensen, 34, began working as a legal collection supervisor after several years of layoffs from other jobs. The couple's insurance is limited. Jensen pays $1,200 monthly for a COBRA plan for himself and Elisse. His wife remains uninsured since it would cost an additional $600 monthly to include her.

In addition to medical expenses, the family will have to pay for travel to Boston, including at least one return trip within the first six months, and lodging there.

Elisse's heart problems were discovered accidentally after Omarlyn, worried about the lung disease that had killed her son, took her apparently healthy daughter to a radiologist in January for a lung X-ray.

Omarlyn, who had seen many of Eli's X-rays, noticed that Elisse's heart looked enlarged. A team of doctors eventually diagnosed a hole in the septum between the atria of her heart, causing the heart to enlarge significantly. An additional arterial problem is causing the blood to flow back into the right atrium rather than into the left one.

Close friend Amy Hand of East Lake said she looked online for costs of the heart surgery alone.

"It was easily $100,000 or more," she said.

The couple worries that Elisse may have lung problems as well. Portions of both lungs have collapsed, and no one seems to know why.

If additional surgery is needed, the costs will rise higher.

"We are going to Mass General," said Omarlyn, 26, "because the doctors there will do a lung transplant if she needs that."

The Florida Medicaid program, she said, won't cover lung transplants in children under age 5. A delay in finding an out-of-state hospital that would do a lung transplant contributed to Eli's death.

Omarlyn now focuses on Elisse and the difficult tasks she faces every day.

"I guess I've put up a wall around me," she said.

Other family members cope in their own ways.

"I lean on family and friends and pray a lot," Joe Jensen said.

His father-in-law also turns to others.

"This is not an easy situation, but it is a reality," Malavé said. "I can go from my house to the ball park and talk to people."

Evelyn Malavé turns to her faith.

"I know we can't change God's plans," she said.

The family's dire situation has stirred the community, and some help has been forthcoming.

The couple signed on to give forward.com, a website for securing donations for loved ones with medical needs. Donations for Elisse can be made at a special website for her: giveforward.com/openyourheartsforelisse.

So far, the family has received close to $24,000 in donations from that source.

Two other fundraisers are in the works.

Hand will hold a yard and bake sale at her East Lake home, 994 Cypress Lakes Blvd., on Saturday from 7 a.m. to 4 p.m. She has been impressed with the response thus far.

"All our friends and neighbors have made donations or baked," she said. "One of Joe's friends donated her entire candle inventory from the store she recently closed."

The public is invited to the sale. Hand can be reached at (727) 457-4097.

On Aug. 31, those attending the Dunedin Blue Jays-Clearwater Threshers game at Florida Auto Exchange Stadium may buy tickets in several raffles or purchase items from Omar Malavé's personal collection of sports memorabilia at the silent auction. All proceeds will go toward Elisse's medical needs.

Malavé said he has been involved with the Toronto Blue Jays organization for 33 years at all levels of play, from rookie to the major leagues.

His donations to the auction reflect some of the best and brightest of those years, but he's giving up his treasures for the sake of his granddaughter.

"I have a bat signed by Roberto Alomar," he said. "He's the first one in the history of the Blue Jays to be in the Hall of Fame."

He also is auctioning a 1993 baseball signed by the entire Blue Jays team.

"This is the year they won the World Series for the second time," he said.

The stadium is at 373 Douglas Ave., Dunedin. Game time is 6:30 p.m., but the gate opens at 5:30 p.m. so the public may view the auction items. The auction concludes after the fifth inning. Call (727) 733-9302 for information.

Malavé said he is focused on little Elisse every day.

"We hope and pray for the best," he said, "but we still don't know how it will turn out."

Elaine Markowitz can be reached at bmarkow2@tampabay.rr.com

After losing one child, family struggles to afford heart surgery for another

08/23/12 [Last modified: Thursday, August 23, 2012 7:58pm]

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