Child living with heart rare condition!

If you were to design a prototypical 15-year-old boy, you might come up with Synjin Modean-Engel.
Favorite activities include basketball, snowmobiling and four-wheeling. When he grows up, he’d like to be a crab fisherman off the Alaskan coast, inspired by “Deadliest Catch” on the Discovery Channel.
His favorite subject: gym. When asked about other subjects, he lists science, geography, math and English. But when asked for a second-favorite, the Canosia Township boy doesn’t budge.
“I think gym. I don’t like the other classes.”
He clashes with his mom, Rochelle Modean-Napoli. The idea of being a crab fisherman is one of those clashes.
He doesn’t like going to the hospital.
“All the old people; needles everywhere,” Synjin related. “Old people in wheelchairs; they’re all crabby.”
Synjin, who lives with his mom in a modest, tidy house near Pike Lake, has gotten to know hospitals better than anyone would want to. A pacemaker was implanted in his chest when he was 9 months old, after a heart murmur was discovered. At 12 months, it was endocarditis. At age 10, bacterial meningitis.
The News Tribune wrote about him that year, when the Make-A-Wish Foundation of Minnesota paid his way to Discovery Cove in Orlando, Fla., to be a dolphin trainer for a day.
But he wasn’t finished. On New Year’s Eve 2006, he and his mom were driving to the Lake Superior Zoo when another car hit theirs head-on on Midway Road, and both mother and son sustained multiple injuries. For Synjin, that included a broken neck in two places.
Then last spring, his cardiologist, Dr. Amarjit Singh of the Children’s Heart Clinic in Minneapolis, noticed the left ventricle of Synjin’s heart was enlarged. He was diagnosed with left ventricular noncompaction. (Singh was out of the office for several weeks and unavailable to be interviewed for this story.)
According to the Cardiomyopathy Association’s website, left ventricular noncompaction is an abnormal development in the wall of the left ventricle, which is the pumping chamber of the heart. It’s believed to occur in the fetus between the fourth and 18th weeks of pregnancy.
Dr. Barry Maron, director of the Hypertrophic Cardiomyopathy Center at the Minneapolis Heart Institute Foundation, said little is understood about the condition.
“It’s a newly recognized muscle disease for which little specific information is known in terms of its natural history and clinical course,” Maron said in a telephone interview. “The management of noncompaction is sort of an evolving thing.”
In Synjin’s case, his pacemaker was replaced with a defibrillator in September. A defibrillator is designed to shock the heart to prevent death from cardiac arrest. It also includes a pacemaker. The defibrillator is shocking Synjin a lot. He says it feels like he’s being jabbed by a tin can in his chest. A checkup last week resulted in a wait-and-see verdict, but surgery might be needed to redo the defibrillator, Modean-Napoli said.
Synjin was in eighth grade last year at Proctor Middle School. This year’s he’s taking classes online via Virtual Academy. (For gym, he’s asked if he has exercised at least 30 minutes.) That’s to guard against infection, Modean-Napoli said. He’s also prohibited from playing contact sports such as football, a sore point with his friends who still want him to be on their team, his mother said. “It’s surprising with all the health conditions, he is as strong as an ox,” she said.
“Tell him about the eight security guards that held me down to get a shot,” Synjin put in.
“It wasn’t eight, it was three,” Modean-Napoli responds — and it was when Synjin was 5.
Modean-Napoli does business online from home, and mother and son work a few feet from each other in their compact living room. “It’s kind of a working relationship now, and it’s not a lot of fun,” she said. “It’s hard to balance because … Synjin gets distracted very easily from schoolwork.”
“It’s hard not to,” Synjin quickly adds.
Synjin’s father lives in Duluth and Modean-Napoli’s parents and close friends live nearby, so relief is available. She declines to discuss medical bills except to say they’re extreme and that even meeting everyday expenses is tough.
Modean-Napoli was taking classes at the College of St. Scholastica when the first pacemaker was put in. Her experience with Synjin’s illness put too much stress on her, she said, “so I called my professors and I said, ‘I’m done, I can’t do this.’” Her preparations for a law enforcement career were ended by the car accident.
“So I don’t know where God is wanting me to go,” Modean-Napoli said, then corrected herself. “Well, right here. Right here with him,” she added, referring to Synjin.
“You’re always running on stress and fear,” Modean-Napoli said. But she takes comfort in the encouragement of a friend. “This is the Lord’s biggest honor,” the friend said. “He trusted you that you would be the warrior for him.”


About livingsimplyrich

Hello World! Thank you for checking out my blog. I love to help with making your life a little more simply rich, whether it is saving some change in your pocket by cutting costs, giving you tips on how to save time and spend more time with your family, tips on what I am doing with my hard earned money, or teaching simply green techniques. All of this adds up over time and makes life a little more simply rich. So sit back and enjoy the ride. Thank you, Rochelle Marie- Miss Congeniality
This entry was posted in Uncategorized. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s