Dylan suffers from a rare disease of both kidneys
“I’m the most unique person in Seychelles,” eighteen-year-old Dylan would often say, more to cheer others up, whenever the conversation turned to the dreadful medical misfortune that has hounded him since childhood.
On Sunday too, when his case was presented before global experts who assembled at Balaji Dental and Craniofacial Hospital, the youth put on a brave face as he travelled down a painful past when he was laid low by glomerular nephritis, a rare disease of both kidneys, as a seven-year-old child.
“There was no doctor [nephrologist] for me in Seychelles,” he said.
As his condition gradually worsened, he was referred a few years ago by the Government of Seychelles to a specialty hospital in Chennai where doctors performed a nephrectomy (removal of kidneys) and transplanted a kidney donated by his aunt. However, the transplant failed after Dylan’s body rejected the new organ.
Dylan, who has to undergo dialysis thrice a day to stay alive, has tried not to slip into gloom.
“You know how I look at all this positively. I think of myself as the youngest kidney patient in entire Seychelles…in fact I am the only one without kidneys…which makes me rather unique.”
His mother keeps motivating him to fight and not give up.
“Why, Mama, weren’t you the one who always tells me to fight,” he would remind her when his mother’s motivation waned.
But, Dylan now has other critical battles ahead.
His disease has aggravated into a syndrome with multiple organs beginning to misfire.
The state of renal osteodystrophy, a mineral and bone disorder triggered by his chronic kidney disease, has now manifested as Brown’s Tumour involving in-growth of abnormal tissue.
“One tumour is almost choking his throat and I am trying to prepare the patient for a mandible reconstruction surgery on the jaw in about two weeks,” said Dr. S. M. Balaji, Director of the Hospital, who is jointly reviewing Dylan’s case with nephrologist Georgi Abraham.
A team of global experts invited by the hospital for a meet on new research trends in craniofacial biology are also helping shape a judicious treatment plan for Dylan as well as other complex cases, including a child with plagiocephaly or flattening of one side of the skull accompanied by congenital deficiency.
They include Rena D’Souza, president, American Association for Dental Research, Gerhard Conrad Seeberger, president, European Regional Organisation, Italy, Nico Geurs, Chair, University of Alabama at Birmingham, the U.S., Christos Angelopoulos, Executive Director, American Board of Oral Radiologists.
A team of global experts invited by the hospital are helping shape a judicious treatment plan for the youth