Erin & Ryan

Ryan’s mother, Erin, describes her son’s story:

Ryan Murphy was born in June 2009 by planned C-Section. He was three weeks early, weighed 9lbs 10oz, and he is our little miracle baby. He was born with a cleft palate, poly-cystic kidneys, a suspected heart murmur, enlarged liver and kidneys and pulmonary hypertension. Before he was one day old, he was on a ventilator and by day two, he was on the oscillator and almost transferred to Boston. When he was just over a week old, he was already back to breathing room air.  He spent the first four weeks in the NICU at Eastern Maine Medical Center before being transferred to Children's Hospital in Boston for an additional week.  

Ryan was born with Simpson Golabi Behmel Syndrome, which is a very rare over-growth syndrome. The characteristics of the syndrome vary greatly from case to case.  Ryan has been followed by at least eight different doctors and three therapists at some point in his three years of life and he is regularly screened by ultrasound and through blood draws due to the increased chance of tumors that his syndrome brings.

In the past three years, Ryan has had three surgeries and has spent time in the PICU, NICU and pediatrics floor at two different hospitals. His doctors are located in Bangor, Boston and Portland.  He had his first cleft palate repair at 10 months old.  As he grew it became obvious to us that his palate wasn't functioning correctly.  Our home surgeon gave us a 60 percent chance of fixing the problem with a second surgery.  We travelled to Boston for a second opinion and eventually he had his second palate repair down there. This was a very stressful time, and within one year we had to travel to Boston seven times! The palate repair was successful and his speech is getting much better.

Since Ryan was born three years ago, we have travelled over 7,000 miles to doctor's appointments.  Irving Oil's Fuel the Care Program allows us to get Ryan the medical help he needs without having to worry about the additional cost of gas.  We can choose who his providers are based upon his needs and their expertise and not have to worry about the cost of fuel. That means we can get him the best care available and that is amazing.  It is a blessing that we are so very thankful for!