B U F F A L O N E W S
battles rare disease and cancer
Hospital played vital role in saving his life
By MARK SOMMER
News Staff Reporter
But few children at 22 months can match the kind of time Ian has spent in the hospital.
Few suffer from the rare Congenital Adrenal Hyperplasia Salt Wasting disease. And fewer still also suffer from neuroblastoma, a rare cancer Ian was diagnosed with at 10 months of age.
It's been a rough road for Ian, who remains happy-go-lucky despite his misfortunes. His cognitive development is considered on target.
But thanks to Ian's medical care at Women and Children's Hospital, his parents, Robert and Dona, say they have reason to be hopeful. "Children's has been awesome. They have been really great," said Dona Cameron. "How do you repay a facility for keeping your child alive?"
Ian's condition was discovered by the newborn screening test, a state program that tests for genetic disorders. The results became known three weeks after Ian was born on May 28, 2004, at Sisters Hospital.
Congenital Adrenal Hyperplasia Salt Wasting - which occurs in one out of 15,000 births - prevents the adrenal glands from adequately responding to physiological stresses, such as infection or trauma, or maintaining the body's fluid and electrolyte balance. Since they can't retain sodium, children like Ian also become dehydrated much faster than healthy kids.
Ian takes oral medication to compensate for what his body cannot manufacture. Severe stress requires it to be administered intravenously.
Ian's condition requires frequent trips to the hospital, often for fluid or shots. And he needs constant observation at home, since the warning signs of a worsening condition - lethargy and paleness, followed by shock - can easily go unnoticed.
Ian's health problems were compounded at 10 months of age, when a tumor the size of a lemon was discovered attached to his adrenal glands and inside his spine. It's believed the stage 3 neuroblastoma had been growing since birth. Ian was put on chemotheraphy for four months to treat the tumor and underwent five surgeries. His weakened immune system from the chemo led him to come down with e coli.
Dr. Lorna Fitzpatrick, a hematologist and oncologist who treats Ian, said just six to eight cases of neuroblastoma are seen in a given year in Buffalo.
"Ian's a great kid. He's a trouper. He's gone through so many things in his little life, and yet every time I see him, he just smiles," Fitzpatrick said. "He's getting toward that terrible two stage, but he's just a delight."
Ian's time in Children's was brightened by visits from members of the Buffalo Bisons, and two visits from Buffalo Sabres great Pat LaFontaine.
Ian is currently cancer-free. While he can kneel and crawl backwards, the tumor has left him with no sensation from the hips to his knees, and paralysis from the knees down. Chances are slim the paralysis will go away.
Robert Cameron said he appreciates funds raised from the Variety Club Telethon that pay for equipment at the hospital, citing a pump that delivered chemotherapy medicine to Ian.
The Camerons also are grateful a compounding pharmacy at Children's makes liquid medicine for Ian that would be unavailable at most drugstores, and provides home deliveries.
The Camerons are in a local support group, and Dona is the local contact for the Cares Foundation, which provides education on Congenital Adrenal Hyperplasia. She's grateful for the sensitivity shown by Children's nurses and doctors.
"It's easy to feel like a neurotic mother because Ian's disease is so rare, and they haven't made me feel like that," Cameron said.