We’re so excited to share Super Ryan’s Extraordinary story. His mom, Erin, wrote to us about her TinySuperhero:
Super Ryan at 2 days old on the ventilator.
Ryan was huge when he was born 3 weeks early on June 1st, 2009. He weighed 9 lbs. 10ozs. He was huge and he was very very sick. He was born with a cleft palate, polycystic kidneys and pulmonary hypertension. With a very shaky start to his life, we watched and waited. When he was 2 days old, he was put on a ventilator. The NICU doctors told us that he appeared to have some kind of genetic syndrome that “may not be compatible with life”. They also told us that he was now on the highest level of life support available, and if he didn’t improve in the next hour, he would be lifeflighted to Boston to be put on a heart lung machine. Amazingly, he improved and we spent the next 4 weeks in the NICU before being transferred to Children’s Hospital Boston for 1 more week. We finally got to take our sweet boy home on July 7, 2009 and it was a feeling we would never forget.
During our stay in the NICU, Ryan was diagnosed with Simpson Golabi Behmel syndrome, a syndrome that has only affected about 130 people worldwide. It carries with it a variety of medical and cognitive problems. Basically, it’s an overgrowth syndrome that carries with it a higher risk of tumors and childhood cancer, most specifically Wilms Tumor, Neuroblastoma and Hepatoblastoma (cancer of the kidneys and liver).
Super Ryan at his first surgery, 10 months old.
Super Ryan after his 2nd surgery, 2 years old.
From birth until age 4, Ryan was screened every 6 weeks for tumors by either a blood draw or an ultrasound. By the age of 4, Ryan had already had at least 20 blood draws. To this day, in addition to the 20 blood draws, Ryan has had over 25 ultrasounds and 6 MRI’s (both under sedation and under anesthesia). In March 2013, he had his first abnormal ultrasound, and doctors saw what they thought was a tumor. This led to an MRI and I thought that the day we had been dreading had come.
This happened again in June of 2013. In September 2013, Ryan had an MRI and a mass was found in his kidney. We will never forget the day that our pediatrician sat us down to tell us that Ryan was being referred to an oncologist. After multiple visits with the oncologist and more MRI’s, there was no growth seen in the mass in Ryan’s kidney and in April 2014, he had his last ultrasound and visit with the oncologist. He will continue to have ultrasounds every 3 months (with MRI’s as needed) until he is 8 years old.
Super Ryan with Olaf at Disney World!
In his 6 years he has had two surgeries to repair his cleft palate and 1 surgery to repair a double hernia. He has had hundreds of doctor’s appointments with doctors, including the cardiologist, nephrologist, neurologist, cleft palate clinic, VPI clinic, otolaryngologist, developmental/behavioral clinic, pulmonologist, pediatrician and geneticist.
Ryan just began 1st grade! He loves Star Wars, sea creatures, space and building with Lego’s. He also loves books and reading and is counting down the days until his dream to “swim with the dolphins and teach them funny tricks” comes true with the help of the Dream Factory!