Family Celebrates Daughter's Life Through Tough Times
By: Carly O'Keefe
By: Carly O'Keefe
Makanda, IL - Imagine bringing your healthy newborn home, and six months later discovering she has a rare, fatal and incurable genetic disorder.
"We have loved every day we've had with her. And we will love every minute that we do have," said Kerri Rochman looking down at her daughter, Elise Rochman, Sunday afternoon at Blue Sky Vineyard.
Baby Elise slept silently in her mother's arms as a benefit in her honor took place all around her. The 18-month-old's angelic face looks no different than that of any toddler who may have taken a break from romping around long enough for a nap. But Elise isn't like most toddlers. She is afflicted with Tay-Sachs Disease.
"She has lost most of her vision now, and she can't sit up or move really. She can move her arms a little bit and her legs and she has quite a few seizures throughout the day," said Kerri.
Tay-Sachs is caused by the absence of a vital enzyme, Hex-A, that over time leads to the destruction of the central nervous system. In most cases, babies diagnosed with Tay-Sachs don't live through their fifth birthday.
"She's almost 18 months, and they give her two to four years," said Kerri.
Neither Kerri nor her husband Tim had any idea that they were both carriers of the gene that causes Tay-Sachs before Elise was six months old. That's when they noticed their baby wasn't progressing as most babies do, and sought medical help.
Most carriers of the gene are of eastern European Jewish origin--Tim and Kerri are not. That's why the couple is taking an active role in educating other prospective parents, because Tay-Sachs can strike any family where both parents carry the gene.
"We are going to try to raise awareness through southern Illinois about Tay-Sachs among pediatricians and obstetricians and also provide a screening for people who do want to get tested. That's the ultimate goal," said Tim Rochman.
Food, musical performances, and silent auction items donated to Sunday's event at Blue Sky Vineyard raised money. Tim says he and his wife are more concerned that the benefit is successful in raising awareness.
"If this can just help one person, that's basically it. At least everyone who comes to the door will have at least heard of it. So if anything else, it'll just spread the word. What they do with that information is up to them," said Tim.