Family Learns Lupus Can Be Managed

The diagnosis was devastating, and Bobbie and Steve Clark were taking turns.

One would stay in the hospital room, showing a strong face for their daughter Tessa, while the other took to the hallway to safely shed their tears.

tessaclark“I was praying it wasn’t going to be lupus,” said Bobbie Clark, Tessa’s mother. “We know it could have been worse, but a 12-year-old — you don’t want to think she’s got a lifetime disease that can get worse or become fatal at any time.”

But the scary, uncontrollable systemic lupus erythematosus that they read about on the internet isn’t always the disease experienced by patients. After speaking with David Siegel, M.D., M.P.H., chief of the Division of Pediatric Rheumatology at UR Medicine’s Golisano Children’s Hospital, they learned that there was a chance that Tessa could go back to living a normal life — if her condition responded to treatment.

The Clarks hoped that Tessa would respond.

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Construction Corner: A look inside

Take a look inside the future Golisano Children’s Hospital with these interior photos (and a few good external shots)! Featured in our upcoming Strong Kids newsletter, these pictures take you down the corridor of the third floor, otherwise known as the Neonatal Intensive Care Unit (NICU), and up to the seventh floor to the general patient rooms and our expansive Playdeck.

The exterior renderings have really come to life over the last six months and now the interior of the hospital is starting to do the same. Features of the main lobby are becoming easier to pick out, drywall is being laid, bathroom tile is being placed, and foot and head walls are going in.

Explore the building and learn more about naming opportunities and how you can make a difference for the future of sick and injured children, and their families, at the Finger Lakes region’s only children’s hospital.

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Cleft and Craniofacial Camp to Celebrate Awareness Month

Craniofacial CampJuly is National Cleft and Craniofacial Awareness and Prevention Month. A number of patients and families who are part of Golisano Children’s Hospital’s Cleft and Craniofacial Anomalies Center will create awareness together at the center’s annual Craniofacial Camp on Friday, July 18.

Held at Yogi Bear’s Jellystone Park of Western New York, the camp allows members of the craniofacial team and families to reunite for a picnic and celebration. In addition to enjoying activities like mini golf and horseshoes, attendees can also take part in water activities, including canoeing, playing on Yogi Bear’s Water Zone, and more.

Take a look at pictures from the 2013 Craniofacial Camp on our Facebook page and stay tuned for some from this year’s event!

IMG_3031The Cleft and Craniofacial Anomalies Center at Golisano Children’s Hospital is committed to improving community awareness of cleft and craniofacial conditions and is the region’s only center dedicated to meeting the needs of children born with cleft lip, cleft palate, and other craniofacial anomalies.

Approximately one of every 600 newborn babies are born with a cleft lip and/or cleft palate, making it one of the most common birth defects. Surgery is one of our current priority programs and your gift could help a child born with these common defects. Learn more about how you can make a difference in creating awareness and improving prevention of cleft and craniofacial conditions on the Cleft Palate Foundation website.

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Eddie Meath All-Stars Bond with Patients Before Big Game

Eddie Meath Top Section V football players and cheerleaders took the time to bond with patients at UR Medicine’s Golisano Children’s Hospital over some Abbott’s Frozen Custard on Wednesday, July 2, all before their big east vs. west Eddie Meath All-Star Game. In its 32nd year, the Eddie Meath game continues to benefit patients at the children’s hospital and has raised more than $150,000.

The ice cream social event gives players and participants the chance to bond with the patients they’re playing for. “You can really see the patients light up when they see the All-Stars,” said Betsy Findlay, director of special events for Golisano Children’s Hospital. “Every player makes it a point to make a connection with a patient and you can see in the smiles how much it truly means to both parties.”

See more pictures from the players visit to the playdeck on our Facebook page and check out the news coverage from our friends at YNN, Channel 13, and Channel 10!

The 32nd annual Eddie Meath All-Star Game will kick off at 7 p.m. Sunday, July 6, at Eastridge High School.

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Wilson Foundation Gives $500,000 to General Pediatrics

Joseph Wilson, co-chair of the Wilson Foundation

Joseph Wilson, co-chair of the Wilson Foundation

Inspired by the generosity and legacy of its founders, Joseph C. Wilson ’31 and Peggy Wilson, the Wilson Foundation has awarded $500,000 to establish The Wilson Community Pediatrics Fund in the Division of General Pediatrics at UR Medicine’s Golisano Children’s Hospital. This special gift to The Meliora Challenge: The Campaign for the University of Rochester will allow the division unparalleled opportunity to advance and accelerate projects on behalf of our region’s most needy children and families.

“Our work is all preventative. Some improves care in the short term, but a lot will improve quality and save costs long-term,” said Peter Szilagyi, M.D., M.P.H., chief of the Division of General Pediatrics. “This gift will allow us to add resources to existing programs and to enter new programs, and we will leverage it to try and bring in a lot more.”

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Sun Shines on Construction Site for Summer

outside of buildingThe brick is laid. The windows are in. The crane will be taken down soon. From the outside, UR Medicine’s new Golisano Children’s Hospital looks almost done. In reality, a lot more work is ongoing inside, and we need the support of our generous community to help us get it done over the next 12 months.

As we transition into summer, we love seeing the sun shine on the building with the bright blue sky in its background, showing off its beauty and what it means to so many people.

The windows wrapping around the building reflect the sunlight and  stand out to visitors and those driving by. These captivating windows are just one of the exciting features of the future two-story playdeck on the 7th and 8th floors that will provide patients and families with a great view, which, on clear days, will reach the hills of the Finger Lakes. Progress on the space will even be visible through the windows for those stopping to imagine what it will all soon become.

sun shades NICUThe building team has also made a lot of progress on the future NICU. The floor is framed and drywalled and the installation of the outside sunshades has begun (as seen in the picture on the left).

All of these changes are very exciting and there are so many more to come! Keep up to date by liking the children’s hospital’s Facebook page and following us on Twitter and Instagram.

To find out how you can help support the new hospital, please call Scott Rasmussen at (585) 273-5932.

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Golisano Children’s Hospital Orthopaedics among Nation’s Best

SandersThe orthopaedic specialists at UR Medicine’s Golisano Children’s Hospital have earned a place on U.S. News & World Report’s Best Children’s Hospitals listing for the sixth year in a row.

In the recently-released 2014-2015 rankings, the service ranked 44th among 183 eligible pediatric centers.

“With their devotion to exemplary patient care and a commitment to providing the most comprehensive coverage possible, the pediatric orthopaedics team personifies our mission at UR Medicine,” said Bradford C. Berk, M.D., Ph.D., CEO of UR Medicine.  “My congratulations to the faculty and staff of Golisano Children’s Hospital and the Department of Orthopaedics for, yet again, being recognized as one of the best.”

Pediatric Orthopaedics is the only service at UR Medicine — adult or pediatric — to earn a Top 50 ranking for six consecutive years.

Read more…

LaurenGumtow2Golisano Children’s Hospital patient Lauren Gumtow is one of the many kids who benefit from the hospital’s innovative orthopaedic program. She is one of the first scoliosis patients in the United States to be outfitted with a special new growing rod.

The new device, installed at UR Medicine’s Golisano Children’s Hospital in April, can be lengthened magnetically as a child grows, and will drastically reduce the number of surgeries Lauren needs while she makes her way toward recovery.

Read more of Lauren’s journey…

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2014 Miracle Weekend Celebrates “Outta Sight” Success

Stroll for Strong Kids Gets Groovy 

IMG_0341More than 7,000 Golisano Children’s Hospital supporters filled Genesee Valley Park May 31 for the 18th annual Stroll for Strong Kids Walk and 5K Run. The Peace, Love and Healing-themed event raised a groovy record-breaking total of $445,000 for the region’s only children’s hospital – and you can still donate online until June 30!

It was a beautiful day filled with wonderful people, including hundreds of teams, as well as individuals, decked out in colorful t-shirts, many honoring a special person or division of the children’s hospital.

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CMNH Telethon Celebrates Miracles 

IMG_0995Children and families touched by Golisano Children’s Hospital came together on June 1 to share their remarkable stories at the annual Children’s Miracle Network Hospitals (CMNH) Telethon, presented by Tops Friendly Markets and hosted by News10NBC.

A part of our annual Miracle Weekend, the event recognized the heart-wrenching stories of our 2014 Miracle Kids, as well as those from past years and other supportive and grateful patient families. Co-hosted by News10NBC anchors Nikki Rudd, Lia Lando, Brett Davidsen and Scott Kilbury, the Telethon also allowed time to acknowledge the hard work our CMNH sponsors have put in over the past year, revealing their different fundraising totals throughout the day.

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Telethon to provide sneak peek inside new hospital

The 2014 CMNH Telethon will be from 10 a.m. to 1 p.m. and 6:30 to 11 p.m., Sunday (June 1) on News10NBC, a day after the Stroll for Strong Kids walk and 5K. The Miracle Weekend event will recognize the heart-wrenching stories of our 2014 Miracle Kids, as well as the great work of our wonderful community partners and supporters.

playdeck panoramaAs part of the broadcast, News10NBC stopped by the construction site of the new hospital to get some never-before-seen footage. They got to stand in the future atrium, see that the NICU floor is almost all drywalled and starting to get painted. They were the Playdeck’s first media visitors, and despite it being a bit overcast, they got a glimpse of the Finger Lakes region from the 8th floor. To see it all, you have to watch the Telethon, but to whet your appetite, check out this slideshow of photos from the tour.

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“We are Roman Strong” gives back during Miracle Weekend

RomanFans of the Golisano Children’s Hospital Facebook page, Darcy Eichas-Statt and Kevin Statt began seeing promotions for the 18th annual Stroll for Strong Kids walk and 5K and knew they had to get involved and give back to the hospital that helped their son.

The “We are Roman Strong” team will be joining thousands of other children’s hospital advocates in the Peace, Love, and Healing-themed Stroll for Strong Kids event, May 31, at Genesee Valley Park. The much-anticipated event kicks off Miracle Weekend, with the Children’s Miracle Network Hospitals Telethon following on News10NBC June 1.

Before Roman’s second birthday, Darcy and Kevin noticed their son was developing spots on his legs. Roman’s daycare teacher had also mentioned he was bruising more than the other kids. Darcy took Roman to their pediatrician at Genesis Pediatrics in Rochester who diagnosed him with petechiae – red or purple spots on the skin caused by broken capillary blood vessels – and believed he had a blood disorder. They advised the Statt family to take their son to UR Medicine’s Golisano Children’s Hospital immediately for further blood testing. After treating what initially looked like a blood disorder, doctors performed a bone marrow biopsy and found Roman had leukemia.

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