Golisano Children's Hospital

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When our kiddos can’t come down to the library, our mobile library comes to them. 📚 What book is a must-have in our coll...
04/02/2026

When our kiddos can’t come down to the library, our mobile library comes to them. 📚

What book is a must-have in our collection? Tell us! 👇

Clinical trials bring cutting-edge treatments to patients. But what happens before clinical trials can begin? Natural hi...
03/31/2026

Clinical trials bring cutting-edge treatments to patients. But what happens before clinical trials can begin? Natural history studies—and sometimes they save lives.

🔍 Natural history studies track the course of a disease over time, helping researchers understand how it develops, progresses, and affects daily life.

The neuromuscular research and data coordination center here at GCH played a key role in collecting this data for infants with Type 1 spinal muscular atrophy, which leads to muscle loss and impacts breathing, swallowing, walking and more. By closely tracking progression and survival, the team helped establish a clear picture of the disease without treatment. “We found there was only an 8% survival rate by 20 months,” explained Dr. Lee.

That starting point clearly demonstrated the urgency of new therapies, setting the stage for multiple clinical trials. 🧪

The result? Treatments showing the most drastic improvements, including gene therapy, were brought to patients faster and are now saving lives around the world. 👶🌎

We checked the comments… and we felt the love. 💙Celebrating our physicians this with praise straight from our patients...
03/30/2026

We checked the comments… and we felt the love. 💙
Celebrating our physicians this with praise straight from our patients and families!

Leave your own note for a special doctor in the comments! 👇

It's Purple Day for Epilepsy Awareness, and we couldn't think of a more fitting patient to spotlight than... Violet! 💜At...
03/26/2026

It's Purple Day for Epilepsy Awareness, and we couldn't think of a more fitting patient to spotlight than... Violet! 💜

At age four, Violet suddenly began having dozens of seizures a day. After weeks of hospitalizations, testing, and trying multiple medications without success, Violet’s care team found the answer: Myoclonic Astatic Epilepsy (MAE), a very rare and idiopathic form of epilepsy. Once they determined her diagnosis, her doctors were able to tailor her approach to treatment and quickly started her on the ketogenic diet, which is a frontline treatment for children with MAE.

Months of careful adjustments followed, but slowly, Violet’s seizures came under control. After several years, she was able to wean off the ketogenic diet entirely, managing her epilepsy with medication alone! Today, a junior in high school, Violet continues to thrive with the support of her neurology and keto teams at GCH. She loves acting, photography, and all things history — she plans to one day become a history teacher!

One of her favorite places on earth is Camp EAGR, a sleep-away and day camp for kids with epilepsy and their siblings. There, she’s found a community that truly understands her journey.

Today, we celebrate Violet and all of our incredible epilepsy warriors!

Helping kids be kids, always. 💙 By creating space for play, laughter, comfort, and connection, our Child Life team bring...
03/24/2026

Helping kids be kids, always. 💙 By creating space for play, laughter, comfort, and connection, our Child Life team brings joy to kids and families when it is needed most.

Thank you, GCH Child Life, for everything you do. You make a world of difference in every child’s care!

Last February, Emily began experiencing symptoms of dizziness and double vision, and was ultimately diagnosed with medul...
03/23/2026

Last February, Emily began experiencing symptoms of dizziness and double vision, and was ultimately diagnosed with medulloblastoma: a malignant brain tumor. She underwent brain surgery, radiation, and chemotherapy, before ringing the bell in late 2025.

This February, she served as the Rochester Americans honorary captain of the game - clinically cured.

Hear more about Emily's journey and night with the Amerks: https://www.youtube.com/watch?v=m7Pr95w4Y2I&feature=youtu.be

On World Down Syndrome Day, we’re celebrating Arieona, a beautiful, bubbly girl who we met when she was two years old. I...
03/21/2026

On World Down Syndrome Day, we’re celebrating Arieona, a beautiful, bubbly girl who we met when she was two years old. In 2011, she was diagnosed with acute myeloid leukemia and spent months receiving care at GCH. With her bright smile and unstoppable spirit, she became known as the “Mayor of the Fourth Floor,” bringing joy to patients, families, and staff alike.

Now 17, she’s a happy young woman who loves cozy days at home filled with dancing, arts and crafts, and movie marathons. "She still watches Shrek every chance she gets," shares mom, Sandra. "I thank God for blessing her."

Read Arie's 2012 Miracle Kid story: https://urmc.info/2kR

We were extra lucky this week! 🍀 Each month at John Betlem Heating & Cooling, an employee’s name is drawn at random, alo...
03/20/2026

We were extra lucky this week! 🍀 Each month at John Betlem Heating & Cooling, an employee’s name is drawn at random, along with a donation amount, and that employee gets to choose a charity to receive the gift. This month, we were honored to be selected as the recipient of a $1,000 donation. Thank you to the John Betlem team for your generosity!

03/19/2026

Caring for two starts with caring for you. Decades of research shows vaccination during pregnancy is safe, effective, and an important part of a healthy pregnancy.

In April 2025, Thomas was admitted to Golisano Children’s Hospital after several days of high fevers, pain in his legs, ...
03/18/2026

In April 2025, Thomas was admitted to Golisano Children’s Hospital after several days of high fevers, pain in his legs, and a recurring rash.

Because his family had recently been camping and hiking along the East Coast, doctors initially suspected a tick-borne illness. But when Thomas didn’t respond to treatment, and continued spiking 105-degree fevers for 17 straight days, specialists across infectious disease, rheumatology, and oncology kept searching for answers.

Even in the midst of that uncertainty, Thomas found ways to bring some extra fun to his hospital room. He created a simple game for his care team: placing a small green dinosaur somewhere in his room and challenging staff to find it. If they succeeded, they earned a prize from his carefully curated vending machine collection. It quickly became a favorite among doctors and nurses.

Nearly two months after his symptoms began, Thomas was diagnosed with Systemic Juvenile Idiopathic Arthritis (sJIA), a rare subtype of juvenile idiopathic arthritis that causes body-wide inflammation. Today, he receives regular biologic injections at home and is in medical remission!

Continuing to spread joy, he has begun mailing “worry worms” to other children with sJIA across the country and has loved connecting with families who share the same diagnosis.

Address

601 Elmwood Avenue # 655
Rochester, NY
14642

Telephone

+15852752821

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