Young Girl with Incurable Disease Helps Children in Need

One of 10-year-old Audrey Cisneros' favorite days of the year came Friday when she got the chance to personally deliver 58 teddy bears and a $5,000 check to Boston Children's Hospital to help others with the rare condition she's been battling for the past three years.

Cisneros annually runs a teddy bear drive with her father, Brian, to raise awareness about her rare illness, Opsoclonus Myoclonus Syndrome (OMS), which is a 1-in-10-million autoimmune disorder that attacks the central nervous system of toddlers and young children.

The $5,000 check is the result of Brian Cisneros' recently-completed 550-mile bike trek with with Annie's Angels from Niagara Falls, N.Y., to Hampton to raise awareness about OMS, although he said his daughter's efforts with the teddy bear drive are about more than just money and awareness.

"We do this not just to raise awareness by spreading the word about OMS, but to help kids with their anxiety while giving them comfort and courage while being treated in the ER," said Brian Cisneros on his Facebook page for the cause, also stating that Audrey "takes a lot of pride" in doing this because she wants to help them overcome the "anxiety" she felt when she was in the hospital. "The bears provide a welcome distraction from the stress and fear that children experience while in the hospital, and help boost their strength."

If OMS goes undiagnosed, Brian Cisneros said a child will lose the capacity to walk, talk, or do most tasks that toddlers can achieve. There is currently no known cure and not all children survive the disease, although the Cisneros family hopes contributions and raised awareness about the disease can help spark medical breakthroughs.

"Audrey's treatment consisted of hospitalizations where she started with daily treatments of [intravenous immunoglobulin (IVIG)] treatments," wrote Brian Cisneros, a Lee resident. "She is on several medications and went through over a year of chemotherapy. She ended her cycle of chemotherapy just over a year ago and has been slowly improving ever since. She is still on her medications but her IVIG infusions are down to every 4 weeks. Although Audrey's OMS is under control, every day is still a challenge.

"As parents of a child with OMS, we are trying every day to help spread awareness for this disease. OMS knowledge is crucial so that doctors will not delay diagnosis and can limit brain injury."

More information about the Cisneros family's efforts can be found here, while more information about OMS can be found here.