The only fundraising drive in North Carolina to help those with Opsoclonus Myoclonus Syndrom (OMS) will wrap up this Friday at the Rainbow Child Care Center with a teddy bear collection and bake sale. It is the first such benefit held in Surry County to raise awareness of the neurological-immune system disease.
Jennifer Ault of CK Technologies, who is serving as the coordinator of the 2012 OMS Teddy Bear Drive, said the teddy bear collection and bake sale will be held at the Rainbow Child Care Center’s Piedmont West location off McKinney Road in Mount Airy. It will be held from 3 to 7 p.m. This is the fourth such drive held nationally.
OMS is classified as a disease that attacks the patient’s nervous and immune systems. According to information supplied by the OMSlife foundation, current medical thinking believes OMS occurs when a victim’s body tries to fight a cancer. The foundation’s materials state that research on OMS suggests the body’s normal immune reaction is possibly tricked into going into overdrive by a virus. The foundation also writes that in addition to the physical and mental challenges to children suffering from OMS, it is thought they will require some level of dependent care once they become adults.
“This (OMS) is not well known,” said Ault. “It generally affects one in 5.5 million toddlers yearly.” Ault became involved with combating OMS when a cousin’s healthy looking daughter, Alexa Jennings, suddenly lost her ability to talk and walk as well as having problems keeping her balance in 2009. She also developed problems with her eyesight.
Two months of trips to different hospitals and physicians followed before Jennings was diagnosed with OMS at the Texas Children’s Hospital in Houston. Because the disease was so rare, doctors then had to figure out how to treat the child. Ault said that Jennings began two years of treatment that involved chemotherapy and had to virtually live in a bubble to protect her fragile immune system from encountering any germs.
Ault’s uncle, Mike Michaelis, started the OMSLife Foundation to get the word out on the disease that had attacked his niece. He now coordinates forums in more than 19 countries and serves as a consultant to raise awareness on OMS with no less than 32 events slated for the disease this year in the U.S.
“A lot of people have not heard of this. My uncle Mike has made it the mission of his life so people can get diagnosed faster and so there is money for research,” said Ault. She said that some promising projects to test cures have a price tag of $700,000.
“Until more people are diagnosed and there are more funds, there will probably not be a cure,” commented Ault.
According to Ault, Jennings seemed to recover and was on her last shot of a three-shot series of treatments. Many in the family were looking forward to meeting her in person because she caught OMS so early they had no chance to get to Texas to see her. The OMS came roaring back. Ault said the disease can even re-occur in adults.
“Now she’s back on lock down and starting chemo again,” added Ault. “There wasn’t a lot going on at that time to get the word out on OMS. Alexa saw that others in just as much pain as her had nobody there for them.”
All funds from the bake sale will go to help Brenner’s Children’s Hospital in Winston-Salem. The teddy bear collection caps off the recent drive that has been going throughout September. A donation box will be at the Rainbow Child Care Center off McKinney Road the remainder of this week. Ault said any and all donations of new toys games, books or new stuffed animals and teddy bears is welcome. All items collected will also go to Brenner Children’s Hospital.
“It’s extremely important we try to brighten a sick child’s day with these stuffed animals,” said Ault. She added that the goal for this year’s drive is 5,000 teddy bears and $25,00 in donations. The unofficial total currently is $19,000 in funds raised. Interested persons may contact Ault at 260-908-3164 for more information. The OMS website is www.omslife.org.
Reach David Broyles at firstname.lastname@example.org or 719-1952.