Finding Faith: Family leans on faith while son battles rare genetic disorder
Finding Faith: Victory for Ren
INDIANAPOLIS (WISH)- When Jae and Cathryn Tolliver had their twin babies, they called it a miracle.
They had already failed IVF pregnancies.
They had a boy and a girl. Both babies were healthy and they were thrilled.
Their son Ren was fun, energetic, and hitting all the milestones.
Then around the age of four Ren began to lose his eyesight.
The Tollivers took him to be checked out, not knowing what would cause something like this to happen.
Eventually, through many tests, they learned Ren had batten disease. It’s a rare genetic disorder.
According to the National Institute of Health, batten disease interferes with a cell’s ability to recycle a cellular residue called lipofuscin.
Batten is the term commonly used to describe the many forms of the disease, which is formally called neuronal ceroid lipofuscinosis.
The many forms of the disease are classified by the gene that causes the disorder, with each gene being called “ceroid lipofucinosis, neuronal” (CLN) and given a different number as its subtype.
Because of the different gene mutations, signs and symptoms range in severity and progress at different rates.
The Tollivers say it’s been a tough journey. Acknowledging it’s hard to watch they’re once perfectly healthy boy go through this.
He can often have outbursts of emotion and suffers from seizures.
In many cases, children battling batten disease can suffer from dementia as well.
Currently, there is no treatment or cure, but the Tollivers are patiently watching a clinical trial in the works.