Help with Son's Arthrogryposis Inspires Family to Give Back

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Fuente: http://www.shrinershospitalsforchildren.org/Hospitals/Locations/Philadelphia/Press/Raise_Your_Glass_Fundraiser_for_Shriners_Hospitals.aspx

Help with Son's Arthrogryposis Inspires Family to Give Back

Wednesday, November 21, 2012

Adam Yenish with a photo of his son AJ. AJ was born with arthrogryposis, a congenital disorder causing joints to stiffen. With surgery and therapy from the medical team at Shriners Hospital for Children® —Philadelphia, AJ, now a toddler, is able to run and play with the aid of braces.

By John Patten of WarrenPatch (patch.com) and reprinted with permission.

Every newborn's parent knows the anxiety of wondering how that child will fare in the world, how they will meet challenges and, hopefully, rise to overcome each one. Few can remember the day they knew all would be fine as clearly as Bridgewater, NJ, parents Adam and Danielle Yenish.

The couple's 3-year-old son Anthony John was born with arthrogryposis, a congenital disorder causing joints to stiffen, which impairs development and movement, as well as a pituitary disorder. Arthrogryposis affects about 1 in 3,000 babies born in the U.S.

At birth, the baby's feet wrapped around and up towards his body while his little hands were twisted to his sides.

But Adam Yenish says he remembers the moment July 3, 2011, when his then 23-month-old son stood up and walked across the room, unaided. That's when he knew little "AJ" would be fine.

The moment was possible because of some amazing therapy guided by Harold vanBosse and Scott Kozin, doctors at the Shriners Hospital in Philadelphia, who made "the impossible, possible," as Danielle Yenish put it.

Today, "AJ" (pictured at left) runs on the beach like any toddler, all bright eyes, smiles and energy. Though he often wears braces, a series of surgeries stretched those ankle joints to straighten them, enabling him to walk, while therapy has corrected his wrist joints.

The Yenishes were so touched by the work of the doctors and staff at Shriners Hospital, they wanted to make a special toast, to gather several hundred people together and raise their glasses to the doctors who made "the impossible, possible."

On Jan. 26, the foundation launched by the couple—appropriately named the Raise Your Glass Foundation — will host it's first fundraiser at the Bridgewater Marriott, with proceeds "going straight to the Shriners Hospital" as Adam said.  

During the event, Yenish said he hopes to raise $25,000 or $30,000 for the hospital which provides its services to children without billing families for any costs not covered by insurance. In addition to the $125 ticket admission, there will be raffles of items including tickets to Mets, Yankees, Phillies and Red Sox games, a custom Gibson Les Paul guitar, iPads and Kindles, and discount certificates for local restaurants and shops.

Also, Yenish will more literally raise a glass in salute to Dr. vanBosse in appreciation of his work to make moments like July 3, 2011, possible. Yenish said Dr. vanBosse — an orthopedic surgeon with a special interest in arthrogryposis drawing patients from across the country and overseas — connected with the couple from their first visit to Shriners Hospital.

"We had been to Morristown Hospital and about 20 other clinics and offices before we went to the Shriners Hospital," Yenish said of their search for help that began when ultrasound images showed the unborn infant's unmoving feet and wrists. He recalled his distraught wife crying at each visit, as puzzled doctors looked at Yenish's portfolio of ultrasound images. But it was different when they met Dr. vanBosse.

"As we tried to get answers, they just held my wife," he said, adding the doctors explained what could be done, finally giving the young parents confidence about their son's future.

Yenish also notes the help he's gotten from his coworkers at Warren's Woodland School, where he's a fifth-grade teacher, made a difference. Most of the volunteers at the Raise Your Glass Foundation are parents from the Woodland School community and he said the school's principal, Christopher Huss, has helped make fundraising for the foundation an ongoing school project.

And the teacher in Yenish can't help but make his experiences a teachable moment for the school's students. He shares the images of the newborn "AJ" as well as a video of the toddler running on a beach during last summer as a way to teach kids to focus on similarities and not differences.

"He can't run, he can't jump — but as I tell the kids, you see him on the beach and you won't see him as somebody who's different," he said.

Tickets to the Raise Your Glass Foundation Winter Gala are available through the foundation's website, and more information about the gala is available on the foundation Facebook page.

About Shriners Hospitals for ChildrenShriners Hospitals for Children is changing lives every day through innovative pediatric specialty care, world-class research and outstanding medical education. The 22 facilities in the United States, Canada and Mexico provide advanced care for children with orthopaedic conditions, burns, spinal cord injuries, and cleft lip and palate. For more information visit, www.shrinershospitalsforchildren.org.

For information about the programs and services of the Philadelphia hospital, please visit www.shrinershospitalsforchildren.org/philadelphia.

Shriners Hospitals for Children is a 501(c)3 non-profit organization and relies on the generosity of donors. All donations are tax deductible to the fullest extent permitted by law