Author: Kat J. McAlpine

A father’s hope for his son’s life

Juan and Fredy pictured in 2017, nearly one year after Fredy's tumor was removed.
Juan and Fredy in 2017.

Juan was looking forward to having his son, Fredy, 14, finally come home to live with him. The teenager had been living under the care of his grandmother since he was a toddler.

But on that long-awaited homecoming day, Juan was quickly jarred from feeling great joy to grave concern.

“When I saw his face, one side looked very different from the other and his lip was swollen,” says Juan. “He admitted right away that his face had been hurting.”

Juan remembered that the last time he’d seen his son — more than one year ago — Fredy’s face had looked slightly different then too. But whatever was happening, the situation had clearly become much worse since then. Something was undeniably very, very wrong.

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Double take: The special approach that corrected one child’s vision overnight

Dr. David Hunter, pictured here, corrected Eliza's crossed eye at Boston Children's Hospital
Dr. David Hunter is a pioneer in detecting and treating children’s eye conditions with a range of new and tried-and-true technologies and techniques.

“At school I was seeing double today, Mom,” said 9-year-old Eliza in May of 2015. Catherine hadn’t noticed her daughter’s eyes crossing and suspected that her fourth grader was simply tired.

A few weeks later, however, Catherine and her husband were sitting in the front row at Eliza’s chorus concert, when suddenly they both noticed their daughter’s eye was crossed. It was Eliza’s 10th birthday.

“She was fine one day, and then the next her eyes weren’t working together,” says Catherine. “It was terrifying.”

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First a birthmark, then a rare-disease diagnosis

Brielle, who has Sturge-Weber syndrome, peers over a wooden fence as she plays outside
Brielle plays near her home in Rhode Island.

Two-year-old Brielle Coutu loves listening to music, dancing and eating enough cheese that her mother, Heather, often wonders aloud, “Are you a mouse?” Brielle loves to play outside and is usually a chatty, happy-go-lucky little girl. But, sometimes, she can be overwhelmed by the excitement of gathering with family and friends.

“We think she has some sensory sensitivities related to her Sturge-Weber syndrome,” says Heather.

Brielle was born with what’s known as a port-wine birthmark on her face. It is aptly named for its dark reddish color. Port-wine birthmarks can be present on otherwise healthy babies. But Heather and her husband, Justin, quickly learned that this type of birthmark can alternatively be symptomatic of a worrisome underlying condition.

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Grabbing the reins her own way

Chloe, a roder rider with brachial plexus, rides a horse during a barrel race.
Chloe Neff, a rodeo rider with brachial plexus birth palsy, will compete in barrel racing world championships. 

Barrel racing isn’t for the faint-hearted, that’s for sure.

In this rodeo event, horses and riders whip around barrels at lightning speeds. Tails flourish in the air and muscles ripple. Powerful horses are coaxed by their riders to spin around each barrel as quickly as possible.

One such duo, 16-year-old Chloe Neff and her horse, Raise a Glass Dancer, will soon be on their way to barrel racing’s world championships.

“If you keep trying and working at it, you can do anything you want to,” says Chloe. Her record for completing a barrel course is 16.6 seconds. “Right now, Glass and I are working toward a 15.”

In the Perry, Georgia, stadium where barrel racing world championships will be held later this year, Chloe’s parents may be the only people to notice anything seemingly different about Chloe, as she and Glass flash past the stands. That’s because Chloe, who has received care from the Brachial Plexus Program at Boston Children’s Hospital since she was 5 months old, sustained damage to her left brachial plexus nerve when she was born. The injury jeopardized Chloe’s use of her left shoulder, elbow, wrist and hand.

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