BEMUS POINT - Just thinking about the sight of her 8-year-old son Ryan running around playing tag, Dawn Samuelson gets tears in her eyes.
Just one year ago, Ryan was in a hospital in Pittsburgh, awaiting a surgery that would save his life. In the months that followed that surgery, however, complications resulted in the loss of a kidney and nearly the loss of his life.
He was unable to walk for several months, and up until just a few weeks ago his movements were slow and belabored. But now, his mother says, he is moving around like a normal 8-year-old child should.
''Considering the fact that he has been through what he's been through, you'd never know it looking at him,'' Mrs. Samuelson said. ''Until you lift his shirt up and see all the abdominal scars, you would never know he has been sick.''
But ''sick'' is an understatement for where young Ryan Samuelson has been in his life.
A TRAUMATIC EXPERIENCE
Born with a genetic disorder called autosomal recessive polycystic kidney disease, Ryan's organs began to fail him at a very young age. He received a kidney transplant from his father when he was 4 years old. By last May, the disease had done enough damage to his liver that he required a transplant of that organ as well, which he would receive from his Aunt Lydia.
Complications arose, however.
''He had a rare thing happen,'' his mother said. ''He ended up getting 'small-for-size syndrome,' which was very unique to children.''
The syndrome, caused by having insufficient functional liver mass, was treated by used of a TIPS - transjugular intrahepatic portosystemic shunt - procedure that implanted a stint in Ryan's new liver and re-routed blood flow and fluids. Ryan was one of the first children to receive the procedure, his mother said.
While the drastic measure saved Ryan's liver and his life, it did cost him the use of the organ that had been given to him by his father three years earlier.
''He was accumulating so much fluid that he had like 18 liters of asides a day,'' Mrs. Samuelson said. ''Through all that, because of the medication and the multiple surgeries, that's what damaged the kidney - that's how we ended up losing it.''
Ryan ended up in the Intensive Care Unit at the hospital in Pittsburgh for more than 100 days as he attempted to regain his health. During that time, his mother said, muscle atrophy cost him his ability to walk.
While he was in Pittsburgh, Ryan was receiving so many blood transfusions that the Rotary Club of Jamestown held a drive at the Jamestown Savings Bank Ice Arena to help replenish the supply.
''It was just absolutely amazing,'' Ryan's mother said. ''And it all went to the Pittsburgh Blood Bank, where we had used up all the blood.''
Eventually, however, Ryan made enough progress that he was released from the hospital and able to return home to Bemus Point in November. In addition to taking him to dialysis treatments in Buffalo three times a week, his mother began homeschooling him.
''It's a great time to work on his school work,'' Mrs. Samuelson said of the trips to Buffalo, which will continue until a new kidney is found for Ryan.
But the sacrifice of needing to take him to Buffalo for treatment three days a week is more than worth it, his mother said, considering what the alternative might be.
''He had made it through the transplant, but because of the actual syndrome he had come pretty close to not making it,'' Mrs. Samuelson said. ''It was a pretty horrible, traumatic experience.''
SEARCHING FOR A KIDNEY
While Ryan is quite healthy now, he is still in need of a new kidney. While he is on the list for a cadaveric donation, the family is actively searching for a living donor through the help of the Western New York Kidney Connection. However, because of the numerous blood transfusions Ryan has received throughout his young life, the number of antibodies in his system will make finding a match extremely difficult.
''They have to be O-positive in order to be tested, and once they're tested they have to go through a tissue match,'' Mrs. Samuelson said. ''I talked to the transplant coordinator (recently), and they said to just get as many people who are O-positive who are willing to just get tested, because our chances of finding somebody would be better - but it's going to be very, very difficult.''
While numerous members of the community, many of them strangers, have already been willing to step up to the plate and go through the testing process, no match has been found yet. Mrs. Samuelson said four people are currently in the testing process.
The good news is that, for now, Ryan is doing quite well. However, there are other issues. His spleen is also abnormally large, eating away at his red and white blood cells. While it should be removed at some point, Ryan's mother said doctors are hoping a kidney donor will be found to allow both surgeries to be done at the same time - reducing the number of invasive surgeries that need to be done on Ryan's already heavily scarred abdomen.
Meanwhile, not only is Ryan doing well, but his Aunt Lydia is also back up to speed with no side effects of giving a portion of her liver to her nephew.
''She's running,'' said Mrs. Samuelson, her sister-in-law. ''She was a runner before, and just the fact that she has donated such a traumatic organ - they have to cut the organ - just blows my mind. Living donation is not as bad as it used to be, and people are becoming more aware of it and saving people's lives.''
Ryan's mother is hopeful that the right donor will eventually step forward and pass the tests necessary to give Ryan the kidney he needs. Anyone who might be interested, she said, should go to www.wnykidneyconnection.com and find Ryan's name.
''They can actually get on the site, and there is a phone number for the transplant coordinator,'' Mrs. Samuelson said. ''I know a lot of people are afraid to get involved, but I'm saying let's not even worry until we know that there's a match - once there is, we can sit down and talk about all the details.''
For the time being, though, Ryan's mother said she is just blessed everyday to see Ryan running, playing the Wii and just acting like a healthy 8-year-old child.
''It's a miracle,'' she said. ''The community has been so involved with Ryan over the years, and we just want them to see that it's not just all sad stuff - it's such a huge blessing too.''
