Author: Jenny Fernandez

The founder, a parent and a patient: Three yogis who are giving back

Yoga family
Anabelle, Bill and Jaime MacDonald

Yoga instructors and practitioners from New England and around the globe come together every year for Yoga Reaches Out. The day-long gathering inspires and unites participants in a day of selfless service or “seva” benefitting families and children.

Now in its eighth year, Yoga Reaches Out has donated over 1.3 million dollars to help fund Boston Children’s neonatal intensive care unit (NICU), the Heart Center, leukemia research, autism research, a playground, key research and the Wellness Program. Offering free services like yoga and meditation, The Wellness Program is a place for families to gain the strength, resilience and hope they need as their children go through the toughest tests of their young lives.

Read the stories of three yogis giving back this year.

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Daphne’s story: Lifting the fog on bladder exstrophy

Girl with bladder exstrophy playing at home

The day of their 18-week prenatal appointment was the first day of the most difficult period in Pam and Jon’s life. When the ultrasound technician couldn’t see their baby’s bladder, a second ultrasound was ordered to see if the bladder would become visible with another look. The question remained: Could it be something benign or a serious medical issue?

Pam panicked. Jon tried to stay calm. They had so many questions, plus a 2-year old daughter, their careers and a house to take care of. Their beloved Red Sox were playing in the World Series. Family and friends offered, with the best of intentions, conflicting advice.

The second ultrasound confirmed that their baby would be born with bladder exstrophy, a rare and complex birth defect where the bladder develops outside of the body. No one they knew had ever heard of the condition, not even their obstetrician.

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Happy Halloween to our patients

To the princesses and princes who slay dragons,

the firefighters who battle things bigger than fire,

the superheroes whose bravery makes us brave

and the fairies who touch us with their magic —

you inspire us today and every day.

 

Click on the photos below to read their stories. 

  • Brothers dressed up as monsters
    Will and Mikey
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Looking at the whole child: Coordinated care for spina bifida helps Jeffrey thrive

8-year-old boy with spina bifida smiles at the camera

Jeffrey Marotz and his family may have driven to Boston Children’s Hospital from their home in New York, but it was really the boy’s feet that brought him here.

Born with severe spina bifida, a complex birth defect that affects the development of a child’s spinal cord, spine and brain, Jeffrey had also been diagnosed with clubfoot, a related orthopedic condition that causes the foot to twist unnaturally.

Previous surgeries hadn’t worked and the braces that had been custom made for then three-year-old Jeffrey didn’t fit correctly. “Nothing was working,” says his mom, Michelle.

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