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KERA's One Crisis Away project focuses on North Texans living on the financial edge.

The Waiting Game: Hoping For Health And Financial Security

Chasing an energetic 1-year-old, balancing shaky finances and managing a rare disease is a tall order for any family. But it’s reality for Isac and Elizabeth Madrid, a Rockwall couple we’re featuring in our series One Crisis Away.

Like many North Texans, Isac and Elizabeth were living a typical middle class life, until a medical emergency knocked them off their feet.

Now, each day is a battle that starts at Baylor Medical Center.

Most 25 year-olds rise and shine with a cup of coffee, maybe Sportscenter or the morning paper. Isac Madrid bundles up, grabs a backpack full of medicine and reports to his doctors at 8:30 sharp.

On Nov. 11, Isac got a bone marrow transplant. Every day since, he’s been back to the hospital for labs and checkups.

“Ever since the transplant, they monitor me constantly, make sure my blood levels are good, they’re high enough for me to battle some infections that I may get,” Isac says.

Isac has a rare disorder called Erythropoietic protoporphyria, EPP for short. In Isac’s case, it’s severe, and chemicals in his bone marrow build up and damage his liver. He’s been sick for a year and a half and lost close to 70 pounds.

Credit Dane Walters / KERA News
Isac's transplant is hard on his body and tough emotionally, too.

One of his doctors is Dr. Estil Vance with Texas Oncology.

“So the first step was a liver transplant with Dr. Testa, and that went fantastically well, and the second part is replacing the abnormal bone marrow with the healthy bone marrow from his sister,” says Vance.

Doctors already tried a bone marrow transplant once, but the graft didn’t take. This time around, they’re optimistic.

“The last transplant we did, we couldn’t possibly have done outpatient,” Vance says. “And this time, he’s doing better. It’s probably a lot harder coming to and from the clinic, it’s easier I think to be in the hospital. Still, it’s going very well I think.”

Dr. Vance will know more about the success of the graft later in December.

Isac says the transplant, blood work and constant check-ups are physically draining. And emotionally, he’s all over the map.

“I guess you could say happy that it’s going in the right direction. But I guess you could say also a little frustrated that I’m not at the end of the process,” Isac says. “But, you know, it just takes time.”

Aside from the obvious pain he’s in, Isac battles chronic worry. He’s too sick to work, which puts his family in a tight spot financially. His disability benefits plus income from his wife’s full-time job don’t cover all their expenses, so they’re constantly juggling bills and payments. They’ve even started an online fundraising drive.

Worse still, Isac is missing precious time with his only child, an 18-month-old boy named after his dad.

“You know I still can’t pick him up that much. Can’t really play with him,” admits Isac.

He has a huge family that loves to celebrate the holidays, but this year, Isac spent Thanksgiving in bed. He’d love Christmas to turn out differently.

“With seven sisters I also have 18 nieces and nephews. So it gets pretty loud, it gets noisy, everybody plays. We all go outside, some of us play football, baseball. And I probably won’t get to do none of those things. I usually for the most part just last two or three hours before I’m drained out and have to go home and rest,” Isac says.

Which isn’t the way a young husband and father wants to move through life.

But if this bone marrow transplant takes, Isac’s doctors paint a much brighter picture.

“Our hope would be within just a few months of transplant that he would be back to normal. I’d think he’d still be fatigued and still probably be some weight issues, but hopefully back at work and spending time with his family and not with us,” says Vance.

And that’s a doctor’s order Isac says he’d gladly follow.

Isac and Elizabeth’s online fundraising page is through You Caring. Watch a video of Isac and his doctor below.

Courtney Collins has been working as a broadcast journalist since graduating from the Medill School of Journalism at Northwestern University in 2004. Before coming to KERA in 2011, Courtney worked as a reporter for NPR member station WAMU in Washington D.C. While there she covered daily news and reported for the station’s weekly news magazine, Metro Connection.