Tripp Raymond Miller, now 14 months old, holding own against Prader-Willi Syndrome
Tripp Raymond, son of Scott and Beth (Tysdal) Miller of Wall, was born by cesarean section on August 4, 2008. Symptoms resembling premature birth, especially pulmonary hypertension heart problems and not crying when he was hungry and not wanting to eat, lead to a final diagnosis of Prader-Willi Syndrome (PWS).
PWS is an extremely rare genetic condition. In infancy, it is characterized by weak muscle tone, feeding difficulties, poor growth and delayed development. Beginning in childhood, individuals develop an insatiable appetite and chronic overeating, resulting in obesity. People with PWS typically have mental retardation or learning disabilities and behavioral problems.
Now, after over four weeks in the Neonatal Intensive Care unit and almost a year at home, Tripp is still fighting the life-long battle. "He will never grow out of this, it's a terminal illness," said Beth. "Most people with PWS make it to about young adulthood, mainly because of eating problems, of never having the sensation of being full. Eventually obesity, heart disease and diabetes kill them."
His family is still full of optimism. "Tripp's heart problem of pulmonary hypertension is completely taken care of," said his mother. "He is off oxygen, off the heart monitor and off the Lasix-Viagra. He currently needs no medications, nothing." The Lasix was used to open the veins between his heart and lungs so oxygen could flow correctly. Though he weighed only 16 pounds and 12 ounces at his last doctor's appointment in August, Tripp is improving.
Tripp is receiving physical therapy to counter his weak muscle tone and to improve his slow metabolism. He is receiving occupational therapy to help him use a spoon, to sit up by himself and to transition from a bottle to a sippy-cup. He is receiving speech therapy to improve his jaw muscles and learn to repeat sounds. "Things that a kid his age starts to do naturally, he has to work at and it has to be taught to him," said Beth.
Doctor Eugene Hoyme, a world-renowned genetics doctor and head of Pediatrics Sanford Hospital in Sioux Falls, does not believe Tripp will be mentally retarded. "That's good news, that he will be okay," said Beth.
"Our families are very good about helping us out," Beth added. They take Tripp, his big brother, Alex, and his big sister, Morgan, for a few hours so I can go shop. Or, if Scott and I want to go someplace for a few days, they are very good help." Tripp's grandparents are Laurie and Mark Hindman, Wall, Mike and Debbie Miller, Philip, and Wade Tysdal of Lexington, NE. Great-grandparents are Louise Miller, Philip, Kathy (Clark) and Harley Furrey, Carter, Lucille Tysdal, Sturgis, and Robert and Mildred Raymond, Ft. Pierre. Ann Sieler, Winner, is Tripp's great-great-grandmother.
His father, Scott, said, "I love Tripp. I am so proud of him."
"It's going to take everyone's help to make sure Tripp has a good and healthy life," said Beth. "Sweets and that kind of stuff are out of the question, they actually will make him sick. I hope that he won't be teased about his eating problems, which might increase any behavior problems."
In a few years, human growth hormone intervention may be able to give Tripp a normal life. The regimen will speed up his metabolism, make him stronger and help him exercise to wear off extra weight. Once the regimen is started, it will be necessary to continue it for the rest of his life. Between the ages of two and six is when the eating disorder normally begins; when he will be a bit stronger, can move around more, is starting to feed himself and when the hunger sensations begin to kick in. His family understands that they may have to lock the refrigerator.
"As he grows, we are not sure what we are going to do yet, other than play it by ear. But, we are planning on a normal childhood for him, starting with pre-school and kindergarten," said Beth.