Brothers Bear Each Other’s Burdens

Brothers bear each other's burdens


Every photo in the #RockYourScar photo contest has a story behind it. When the Heartbeat team saw Alessandro Perales’s photo, which includes a smaller photo of him and a fellow superhero in the upper right-hand corner, we had to know more.

The second hero in the photo is Sebastian, Alessandro’s twin brother. The boys turned 7 in April. Their parents, Raul and Cindy Perales, learned that Alessandro had a rare congenital heart defect, hypoplastic left heart syndrome, when Cindy was 18 weeks pregnant. Sebastian’s heart is healthy.

“When you hear this diagnosis, you don’t know what to expect down the road,” Cindy Perales says. “Doctors tell you worst case scenario.” So she expected the worst.

But six years later, Perales says, “Alessandro is not the kid I thought we were going to have. I thought he would never be able to do what Sebastian would do, and it’s just the opposite.” Both boys like to do push-ups and sit-ups, and they are on the same football and soccer teams.

Brothers bear each other's burdens - after

Their mother says they’re leaving behind “baby toys” to pursue big-boy interests, including pretending to be the Incredible Hulk, Spiderman and, of course, Superman. Having a heart healthy twin and one with a heart defect comes with challenges.

At doctor’s visits, Sebastian used to pull Alessandro away from the nurses and scream, “Don’t hurt my brother!” And while he’s often protective of Alessandro, sometimes Sebastian would like a scar of his own so that he can get as much attention as his brother. Alessandro has a hard time dealing with anger. Family therapy is helping the Perales family manage these issues. And teachers at the boys’ school are supportive and have been eager to assist with Alessandro’s needs. Perales says it’s also helpful connecting with other families on social media — which is one of several goals of the #RockYourScar contest.

And thanks to the contest, Alessandro is becoming more comfortable with his scar. He used to say his scar was ugly. After winning the contest, though, Alessandro realizes his scar has made him famous. With Sebastian by his side, Alessandro is letting the world know that just beneath that scar — beneath every heart patient’s scar — lives superhero strength.

Join experts and patients discussing valve disease, how patients and loved ones can find information, and the importance of joining in the Valve Disease Day conversation. Follow the chat using #ValveDiseaseDay.

@MLH_CHD Shaun White gets massive score, tops halfpipe qualifying . #HeartMonth #Inspiration

Website design by madison/miles/media