Little Ryan was born with Down Syndrome and a congenital heart defect.
"His surgeries were successful, however, it's his Pulmonary Hyper Tension that is the issue that there is no cure for," said Diane Roberts.
Ryan is hooked up to monitors 24-hours a day, seven days a week. Doctors told his parents after they signed the do not resuscitate order in June; Ryan only has weeks left to live.
"There are no further heart surgeries he can have," said Diane Roberts. "Doctors can sustain him on artificial means but his quality of life would not be what we would want for any of our children."
"Pulmonary Hyper Tension means the blood pressure in the lungs is high and causes problems for some patients," said Dr. Brian Feingold, MD; a Pediatric Cardiologist at Children's. "Some get sick, are prone to passing out or have heart failure."
Dr. Feingold sees about five children a month that suffer from the same heart problem as Ryan, but there is no cure.
"The blood in Ryan's heart is taking the path of least resistant and it is going away from his heart causing his failure," said Diane Roberts.
"We can monitor the oxygen in their blood by using a pulse ox-symmetry probe," said Feingold. "For children it can be used on their ear, finger, or toe."
Ryan wears one around his foot, his levels are around 70, and the average is 95-100.
"It's hard, no parent ever wants to see there child go through this," said Erik Roberts.
Erik works in Blair County for the Department of Military Veterans Affairs Office, of Facilities Engineers. His co-workers have donated their own personal time and vacation days to Erik so he can spend his son's final days by his side.
'I never wanted to be on that end of charity, I always wanted to give to others," said Erik Roberts. "But I am very grateful and can't thank everyone enough."
"We appreciate every day we are given with him and make the best of it," said Diane.
Erik and Diane have decided to donate Ryan's heart to science after he passes.
"One day we hope to be able to prevent these abnormalities and give people a better quality of life," said Feingold.
Ryan's parents created a bucket list of experiences for him, from petting a puppy, to getting a speeding to ticket to even having his first beer with his dad.
"Appreciate today, and don't wait for tomorrow," said Diane Roberts.
For more information on Ryan and to see the families he has inspired around the world click here for the link.