Parents Advocate for their Child
By: Ashley Zilka
Updated: March 8, 2013
Known as "the little professor," 6-month-old Graham Elder has been through more than most can imagine.
Graham was diagnosed with Stickler Syndrome two months ago. The journey to get that diagnosis wasn't an easy one.
"There are a lot of rare disorders that you just don't know about until your child is affected by one and suddenly it changes your life and it really gives you a purpose and I think that's part of being an advocate for your child," said Amanda Elder, Graham's mom.
Stickler Syndrome is a genetic condition that in Graham's case causes hearing and vision loss. When Graham was born, he couldn't make eye contact. Some said there was nothing to worry about but Graham's parents disagreed.
Usually one of the indicators of Stickler Syndrome is a cleft palate. That wasn't the case with Graham. Doctors say another test got the ball rolling.
That test was the newborn hearing screening. That eventually led them to genetic testing at Golisano Children's Hospital.
"He did have some of the more subtle facial features along with failing a newborn hearing screen which is potentially suggestive," said Dr. Kristin D'Aco, Pediatric Geneticist at Golisano Children's Hospital
Graham's dad says not knowing what was wrong with his son was the scariest part of it all.
"Now we know what's going on. Now we know what to expect. I actually told our pediatrician. I actually said I am almost hoping that it comes back positive for Sticklers cause if it doesn't then what," said Timothy Elder.
"So many doctors that really have been so helpful and supportive and happy that there are parents that do these things and really follow their gut and follow recommendations," said Amanda Elder.
Graham enjoys books and playing with his big brother, 2-year-old Julian. As far as his health, Graham will need to monitored with regular check-ups from multiple doctors.
Graham was diagnosed with Stickler Syndrome two months ago. The journey to get that diagnosis wasn't an easy one.
"There are a lot of rare disorders that you just don't know about until your child is affected by one and suddenly it changes your life and it really gives you a purpose and I think that's part of being an advocate for your child," said Amanda Elder, Graham's mom.
Stickler Syndrome is a genetic condition that in Graham's case causes hearing and vision loss. When Graham was born, he couldn't make eye contact. Some said there was nothing to worry about but Graham's parents disagreed.
Usually one of the indicators of Stickler Syndrome is a cleft palate. That wasn't the case with Graham. Doctors say another test got the ball rolling.
That test was the newborn hearing screening. That eventually led them to genetic testing at Golisano Children's Hospital.
"He did have some of the more subtle facial features along with failing a newborn hearing screen which is potentially suggestive," said Dr. Kristin D'Aco, Pediatric Geneticist at Golisano Children's Hospital
Graham's dad says not knowing what was wrong with his son was the scariest part of it all.
"Now we know what's going on. Now we know what to expect. I actually told our pediatrician. I actually said I am almost hoping that it comes back positive for Sticklers cause if it doesn't then what," said Timothy Elder.
"So many doctors that really have been so helpful and supportive and happy that there are parents that do these things and really follow their gut and follow recommendations," said Amanda Elder.
Graham enjoys books and playing with his big brother, 2-year-old Julian. As far as his health, Graham will need to monitored with regular check-ups from multiple doctors.
