Joey Cross is 18 months old. He has a bright and engaging smile that would light up any room. He has a hearty laugh that seems to roll up from deep within his belly. Joey Cross has Tay-Sachs disease. There is no cure and no effective treatment for the disease.
“Tay-Sachs is long-believed to be a disease strictly for Jewish people,” said Ron Cross, Joey’s father, who is of mostly Irish descent, but married to Rachael (nee Janoff) Cross who is of Jewish descent. “You get the impression most doctors don’t even know it’s not just Jewish people.”
|A family affair: Cooper (Coop the dog) Rachael and Ron Cross with their son Joey Cross who has Tay-Sachs disease.|
According to the National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD), Ashkenazi Jews, French Canadians, Louisiana Cajun, Pennsylvania Dutch and preliminary data suggests persons of British Isle and Italian are all at higher risk to be a carrier than the general population.
“Most people who get Tay-Sachs these days are not Jews,” said Rachael Janoff-Cross. “The Jewish people know to get testing.”
Rachael and Ron weren’t tested because Ron is not Jewish. The word in the community was ‘if you’re married to a non-Jew you don’t have to worry about Tay-Sachs’.
She remembers, even after Joey was a seemingly healthy three-month old, telling a friend she wasn’t worried because “Ron isn’t Jewish.” Then she began to notice differences in Joey compared against other children his age.
“We took him to an ophthalmologist,” she said. “He looked in Joey’s eyes and looked up at me and asked if I was Jewish. That was his first question.”
She told the doctor it couldn’t be Tay-Sachs because Ron isn’t Jewish. That’s when they learned it is found in other parts of the population. They are sharing their story, Joey’s story, so people will know to get tested no matter what. The test is a simple blood test that needs to be done before conception.
“Being Jewish, you would think the community would have educated it doesn’t matter your heritage, you need to get tested,” said Rachael. “The message is ‘it’s Jewish.'”
The disease is caused by the absence of a vital enzyme commonly referred to as “Hex-A”. It breaks down fatty lipids which otherwise accumulates in the brain and cause progressive destruction of brain cells. The destruction of cells continues until the nervous system is so badly damaged life is no longer sustainable.
After many specialists and tests, they received the news that Joey has Tay-Sachs and will likely die before his fourth or fifth birthday. Sure, he could survive longer, but it is not likely. It is devastating to the Cross family. Sadly, the best of care available will not change the outcome for Joey.
“With Tay-Sachs, it’s more like four years,” Ron said. “We’ve decided we need to focus on the quality of Joey’s life, not the quantity; that’s what’s more important.”
For Rachael and Ron, it means giving Joey whatever comfort and happiness they can throughout his short life. It doesn’t mean any kind of “quality” of life comparable to most children. The progressive destruction of brain cells equates to recessive motor function and cognitive behavior.
At just eighteen months, Joey needs total care and has virtually no muscle strength or motor function. He can’t roll over or reach for his toys. His head flops back; he looks to the ceiling and rolls his eyes endlessly searching like a baby. Joey’s engaging smile and hearty laugh will still light up a room, but they don’t always come when you’d expect them.
“The biggest regression occurs from one year to 18 months old,” said his mom. “He is like a one month old infant, but he’s the size of an 18 month old toddler.”
Physically he’ll grow about the same as any child, but not mentally or functionally. They will continue to be faced with care decisions throughout his life while showing extraordinary love for Joey every day. No treatment and no cure offer little hope, but they’ve found a great network of support in family, friends, employers and the NTSAD.
Despite those trials, Ron and Rachael are already planning to give back. They’ve planned the first “Joey’s Monster Ball” for Sunday, November 2nd at the 20th Century Theater in Oakley from 5 p.m. – 9:30 p.m. The Halloween-themed event will feature a costume contest, a silent auction and many other great activities. There will be a cash bar with free snacks and appetizers provided. Proceeds go to help support the Cross’s and NTSAD.
It has been devastating for them, but they are awe-inspiring in demonstrating their love for Joey. They hope to find a way to have another child to give Joey a brother or sister who will remember him. There are options, but there are risks and it can be very expensive. In the end, they share a difficult story of loving a child they know they’ll lose. They plan to form a foundation to help raise awareness, support and fund research for Tay-Sachs. Their message is simple and it is a message of love: get tested.
“I want people to know it’s a blood test,” said Rachael. “It’s a blood test to see if you’re a carrier. If you’re not a carrier, you don’t even have to test your spouse. Both parents have to carry it."
There will be a fundraiser event in Joey’s honor on November 2, 2008 from 5:00 p.m. - 9:00 p.m. at the 20th Century Theater in Oakley. The event is a Halloween-themed party where people will dress up as their favorite childhood character/memory (from books, TV, movies, etc.). To learn more about the event, visit the event web site at www.joeysmonsterball.com
More info at: www.ntsad.org
Details on how you can give:
Donations can be made to the
Joseph M. Cross fund at Fifth Third Bank.
Fifth Third Bank
6057 Montgomery Road
Cincinnati, OH 45213
Please include that the gift should be deposited to the Joseph M. Cross fund