Nash was born with D-transposition of the great arteries where the aorta and pulmonary arteries are switched, a hole in the main chamber of the heart and a hole in his aorta. Nash had his first heart surgery at 5 days old and second open heart surgery at 8 months old. He will eventually need a third open heart surgery. Nash is enjoying being a 5 year old and loving life!
Eli was born in May of 2016 after it was discovered that he stopped growing at 35 weeks. At two weeks old he started to have GI complications and at three months old he was diagnosed with Failure to Thrive. Eli continues to struggle with his growth due to food intolerances and delayed stomach emptying. He received an NG Feeding Tube on his first birthday and a G-Tube just before his 2nd birthday. Eli gained his first safe food at 2.5 years old. He currently has about 25 safe foods and is G-Tube dependent for his daily nutrition.
Eli sees numerous specialists at URMC/Golisano Children’s Hospital to address and manage his medical challenges. His daily battles include oral aversion due to a feeding disorder with concurrent medical conditions, delayed stomach emptying, iron deficiency, hypermobility, hypothyroidism, anxiety disorder, and his newest challenge of ketotic hypoglycemia.
A huge thank you to his team at URMC/GCH for helping us with this challenging journey we have been on. We are grateful for his team of doctors who continue to try to find the root cause to all of Eli’s challenges and help us manage his daily needs. It is comforting to have such an amazing hospital so close to home and know that support is there when needed. We could not have made it to where we are today without the support of our family, Eli’s elementary school team, and most importantly his medical team at URMC/GCH!
A day where Marlo thought he would be going to the store to get a snack with his mother and grandmother turned into a day they will remember for the rest of their lives. 3-year-old Marlo was shot in the head while sitting in his car seat. After hours of surgery Marlo was placed on a ventilator. With the continuous love and dedication that Dr. Wakeman and his team showed Marlo he was taken off the ventilator and began to breathe on his own. The doctors, nurses, and hospital staff made Marlo's stay a positive one. The kindness and positive energy shown by the staff helped Marlo and his family through this tragic situation.
Golisano Children's Hospital played a major role in Marlo's recovery. They worked around the clock to ensure he had the proper care. Marlo is now a courageous 4-year-old that fought his way out of a tragic situation. Refusing to give up Marlo learned how to bounce back from any setback in his path. Marlo has been able to turn his struggles into strengths and since the shooting he has returned to being the same happy and lovable kid. Marlo is a testament to show that with resiliency, you can overcome anything.
Mia is spunky, fun-loving, energetic first grader at Colebrook Elementary who loves spending time with family and friends. Diagnosed with undifferentiated embryonal sarcoma of the liver in January 2022, she finished treatment in late July 2022. Mia endured months of hospital stays, chemotherapy, and two liver resections with the most recent one on July 3rd, 2023.
Mia had 75% of her right lobe removed during her first surgery. Though her liver did not grow back as expected, compensatory hypertrophy of left lobe of liver, our Warrior still troops through any and all challenges thrown her way. Mia will be monitored closely with scans every 3 months through 2023-2024 and eventually those scans will space out over the next 10 years.
Our Warrior Mia is happy to say and celebrate being in remission.
Teddy was born on March 31, 2017, 15 weeks premature and weighing under 2 pounds. He spent his first 3+months in the NICU at UR Medicine Golisano Children’s Hospital.
Our journey began with a routine in office exam in February 2017. At that check, they discovered that Ashley was beginning to dilate. We were rushed to Strong and met with a team of high-risk doctors who performed emergency surgery to try and stop the dilating. There was no guarantee this would work, and a week later in a checkup we discovered it did not stop the dilation. We were told we would need to check into the hospital and that the baby might be coming soon.
Ashley spent the next 4 weeks in the hospital on bed rest waiting and hoping that Teddy would stay in long enough to give him a better chance of survival. Every step of the way the techs, nurses, and doctors gave us the best care, advice, and services they could. With this care, Teddy was able to stay in longer but eventually on March 31st, 2017, he was delivered. As a 25-weeker, and with his size, he was considered a micro-preemie. Doctors gave us a 50/50 chance that he would survive.
As soon as we entered the delivery room, a team of nurses and doctors from Golisano Children’s Hospital were ready and prepared to begin immediate resuscitation and begin his care. For the next 3 months he lived in the NICU. He beat every possible crisis that could happen to a baby that small. His strength and the care he received, only at Golisano’s, saved his life.
This would not be the last time Teddy was cared for by Golisano's, as he would be readmitted 3 more times for serious respiratory issues in each of his first 3 years of life. But even though it was always scary, we knew that — by being able to have a facility like Golisano's nearby — we were getting the best care.
Teddy has turned into the funniest and happiest boy we know who loves being a hockey goalie, playing baseball, golfing with his grandfather, and coming to watch the Amerks! All of this would not be possible if not for all of the staff and services at Strong, Highland, and Golisano's Children's Hospital.