Archive for heart patient
Chloe navigates Marfan syndrome with a positive attitude — and a responsive care team
Chloe Burian has always defied expectations. Despite surgeries and other treatments for several conditions that stem from the genetic disorder Marfan syndrome, the 12-year-old remains upbeat. “Nothing bothers her,” says Chloe’s mom, Audrey. “She goes through life with a smile.” Still, there were moments of doubt along the way, especially when Audrey and her husband, Rudy, ... Read More about Chloe navigates Marfan syndrome with a positive attitude — and a responsive care team
A ‘super’ new heart surgery for a super kid
When you’re the first person in the world to undergo a new type of heart surgery, you don’t have to use the procedure’s clinical name. You can give it any name you want, even your own. That’s what 7-year-old Easton Schlein’s family has done. While his Boston Children’s cardiac surgery team calls the groundbreaking procedure a “reverse ... Read More about A ‘super’ new heart surgery for a super kid
After complex heart surgery, Yah’ir is all smiles
Christina Moreland and Jimmy Austin want their 6-month-old son, Yah’ir, to have a bright future, one where he can pursue all of his dreams. “He can do whatever he wants to do,” Christina says. There’s just one caveat, an understandable one considering that Yah’ir is recovering from complex heart surgery. “As long as he doesn’t ... Read More about After complex heart surgery, Yah’ir is all smiles
Treatment for a complex congenital heart defect gives Alyvia ‘endless energy’
She may be just 3 years old, but Alyvia Parker is already making a difference for other kids with congenital heart defects (CHD). This month, she was a guest of honor at Gulfport City Hall, where, thanks to her and her mom’s advocacy, their hometown lawmakers proclaimed it Congenital Heart Defect Awareness Week. The two also ... Read More about Treatment for a complex congenital heart defect gives Alyvia ‘endless energy’
From Pakistan to Boston: Faiz finally found help for his complex heart condition
Don’t let his shy smile fool you. In his hometown of Lahore, Pakistan, 6-year-old Muhammad Butt is known by the nickname “Faiz the fighter.” Faiz had long defied the predictions of local doctors who said the heart surgery he needed would be complicated and instead advised his parents to enjoy the time they had with ... Read More about From Pakistan to Boston: Faiz finally found help for his complex heart condition
After vascular ring surgery, playing and eating are a breeze for Louis
You can’t blame 10-year-old Louis McFaye for eating three hot dogs really fast. Until last summer, he struggled to eat even a single hot dog cut into tiny pieces. That’s because he had a vascular ring, an abnormal formation of the aorta — the body’s largest blood vessel — that compressed his esophagus and trachea. Throughout ... Read More about After vascular ring surgery, playing and eating are a breeze for Louis
With support for genetic condition trisomy 18, Brooklyn ‘tells her own story’
Erin and Tim Haggan quickly realized they would always be seeking answers after learning the child they were expecting had trisomy 18. It is a life-threatening chromosomal condition, and only about 10 percent of children live beyond their first year. Those who survive grow slowly and often have congenital heart defects (CHD) and other organ anomalies. The couple ... Read More about With support for genetic condition trisomy 18, Brooklyn ‘tells her own story’
Adjusting to sitosterolemia took time, but Justin is now on a healthy path
After Justin Zhao was diagnosed with the rare metabolic disorder sitosterolemia five years ago, the toughest part of treatment was watching his three siblings eat chocolate when he couldn’t. Sitosterolemia is a genetic disease that causes the fatty substances, or lipids, from plant-based foods such as nuts and vegetable oils to build up in the arteries, increasing ... Read More about Adjusting to sitosterolemia took time, but Justin is now on a healthy path
From South Africa to Boston: Kyleigh’s four-year search for good heart health
Kyleigh Kista had three open-heart surgeries in just the first 18 months of her life. But instead of progressing, her health was rapidly deteriorating by the time she reached 3. Her doctors said there was little else they could do, except make her a candidate for a heart and lung transplant. It was shattering news ... Read More about From South Africa to Boston: Kyleigh’s four-year search for good heart health
‘They just cared about Levi’: Finding answers for a complex vascular ring
The first sign that Levi Blair Winkler would no longer have problems swallowing was when, only three days after a complex surgery, he wolfed down four chicken nuggets and an apple. Just as encouraging for his parents, Rachel and Gabe, was that he stopped talking about the bug in his throat. That’s how Levi often ... Read More about ‘They just cared about Levi’: Finding answers for a complex vascular ring