Levi got a second chance at life

Levi got a second chance at life

Living with Marfan Syndrome

Christina Holt/News-Sun

As a first-time parent, you usually think about what your child will grow up to be like. You imagine what their hopes and dreams might be and pray they are born healthy.

This wasn't any different for Frank and Roxana Gonzales who hoped their eldest son Levi, who is now 10, would grow up to have a big loving heart for God but they did not expect him to have a heart the size of a 400-pound man.

Levi was diagnosed with Marfan Syndrome at the age of 1 and underwent his first heart surgery at age 9 in April of 2023.

Marfan syndrome is a genetic disorder that changes the proteins that help make healthy connective tissue. This leads to problems with the development of connective tissue, which supports the bones, muscles, organs, and tissues in your body, according to the National Institute of Arthritis, Musculoskeletal and Skin Disease.

Most of the time, Marfan Syndrome is inherited from one of the parents but in Levi's case it was not. He is the first known case in his family.

Levi did well with the syndrome up until he was about 8 when it started affecting his heart. He became very tired, couldn't breathe well and was thin because he couldn't gain weight.

The bottom atrium of Levi's heart was pumping too much blood and it pooled in the upper part of his heart and in his lungs. His heart became severely enlarged because the blood had nowhere to go, Roxana said.

"You could see (Levi's heart beat) through his shirt," Roxana said. "It wasn't pumping and releasing like a normal heart. It was just pumping and pooling. The whole floor at the doctor's office would come see him and look at his heart.," she said.

The heart surgeon repaired two of Levi's heart valves by placing rings on the left and right atrium and the doctor said those were the biggest rings he's put on a child because his heart was that enlarged, Roxana said.

The surgery was successful but unfortunately Levi had to undergo another surgery the very next day because doctors left a clip inside his chest, Frank said.

Levi was in the hospital for about five weeks after his heart surgery because "his heart was going into afib often. (The doctors) were playing with the medicine because they couldn't find the perfect dose and mixture of meds," Roxana said.

"It would take about a week to see a difference when they switched the medications," Frank said. "It took about three months for the electrophysiologist to figure out the right arrythmia. They were experimenting on medicines to get the right combination because the case was so rare."

"It wasn't fun (at the hospital) because I couldn't go do things like go out to eat, go home or hang out at the park. I did like the popsicles," Levi said.

Levi also had complications with his right lung about a week after the heart surgery and ended up having two instances where his lung collapsed.

"The doctors were looking at discharging him from the (heart) surgery, but Levi woke up on morning and said he couldn't breathe, that his lung hurt and pointed at where the problem was," Roxana said. "The doctors didn't think anything of it (but) Levi started coughing and his breathing was labored. Then his heart went into afib because his lung collapsed. His heart was so enlarged, they were fighting for room. They rushed him into cardiac ICU and discovered the issue with his lung."

A procedure can be done if Levi's lung continues to collapse to make sure it doesn't happen again but so far, it's only happened those two instances.

"The first incident happened right after surgery, so they don't know if it was because his lungs were too weak," Roxana said.

After heart surgery, Levi had to go through physical therapy for about a year and therapy for medical anxiety. Levi was coached on how to control his breathing and calm down to overcome his anxiety.

"He lost all upper body strength," Roxana said. "He couldn't even brush his teeth."

All of the issues leading up to Levi's surgery and the complications that followed were stressful on the family. Roxana and Frank wanted their son to come home and at times it didn't seem like it was going to happen.

"I just wanted to see him worship again," Roxana said. "One of the nights he was in ICU, I prayed for God to give me something to hold onto. There were such highs and lows. I just want to see him worship on stage one last time after all he's been through. God showed me that he would be back and this would pass. Everything was going so bad for so long. This isn't what he had envisioned for him or us."

Levi's heart has been gradually shrinking since his surgery and he has been able to get back to what he considers a normal life for a 10-year-old.

He still has some blood leaking from his heart but it's very mild as before it was life threatening, Roxana said.

"Kids with Marfan's have an irregular heart to begin with but his had other issues," Roxana said. "He was the youngest patient (the hospital has) operated on that was this bad with Marfan's. They usually saw this (scenario) in 17-year-olds."

Levi's heart and lungs aren't the only parts of his body that are affected by Marfan's Syndrome. His eyes, bones and ligaments are also affected.

Both of the lenses in his eyes are shifting because the connective tissue is disconnecting but the issue is more severe in his left eye. At some point, Levi will have to have an artificial lens placed in his eye, Roxana said.

Levi is very flexible and is able to hyperextend his joints as he demonstrated with his thumb by bending it backwards to almost touch his arm.

Levi is also quite tall for his age at five-feet eight-inches. The average height for a 10-year-old boy ranges from about four-feet two-inches to about four-feet nine-inches, according to NationwideChildren's.org.

Levi is a 5th grade student who enjoys studying math, language and science.

When asked what he would like to be when he grows up, Levi said, "I haven't really thought about it but thinking maybe a heart surgeon. I really like science."

He is unable to play contact sports due to the syndrome and his heart; instead, Levi is thinking about playing disc golf with his friends.

Levi also likes go hunting and play at home with his little brother, Mathew, 4.

Mathew was impacted since the family had to live in the Ronald McDonald House in Dallas and he thought that was home. But he did get to visit the zoo a couple of times and extended family would come to visit.

Levi's school, the community of Hobbs and the surrounding area rallied around the Gonzales family to help financially. Expecting Hearts also helped the family out financially.

"The school raised quite of bit of money. Lots of families and our family got together to help support us financially so we could stay with him full time. It helped pay the deductible and pay bills back home," Roxana said.

Frank said, "We are very fortunate to have all the friends and family to be there to support us."

Levi is doing well now and participated in the Partners for Heart Health Walk on Saturday, Sept. 21, at the New Mexico Junior College.

He had an entourage of friends and family supporting him wearing green t-shirts that stated "Team Levi."

After their walk around the campus, Levi was seen running and playing with his friends.

"I've been doing really well," Levi said. "I feel really good."

Roxana said, "He's really happy now (and) enjoying his friends. He was given a second chance and he's living life to the fullest."

"We can breathe a little easier now knowing that he's doing really well," Frank said.

Levi will have to be on medication for the rest of his life but he has a good life expectancy with treatment.