At 2 years old, Bailey Mercieca is walking now, but her hands are still shaky. The bright, energetic little girl who loves to read and play dress-up hasn't left her house - except for hospital visits - since she was diagnosed one year ago with Opsoclonus Myoclonus Syndrome (OMS).

It's a long name and a rare disorder, but what it meant to Bailey is that when she was about 16 months old, she suddenly lost her ability to walk, to crawl, and even to sit up without help. She stumbled around, and her eyes would dart around rapidly in their sockets.

"She stopped walking within a few days, then couldn't crawl and all she would do was lay in the floor," said her mother, Jenny Mercieca. "Even if she could see me, she wanted to be held all the time."

After a month-long search to find the correct diagnosis and nearly a year of treatment, Bailey is slowly improving. In her honor, her family has organized a toy drive for the Child Life Program at their local hospital, which provides toys, safe play environments and distraction items for pediatric patients in the imaging department, ER, the pediatric floor at Women's and Children's and at the St. Jude Clinic.

"The hospital has been tremendous to us," said Jenny, "so we would love to get them stocked with new toys."

The goal for the toy drive is to collect 500 new toys - they must be new due to risk of infection. The Merciecas are also hoping to raise $5,000 for the OMSLife Foundation, which supports OMS research.

A mystery diagnosis

When Bailey first began exhibiting unexplainable symptoms, the Merciecas took her to the emergency room. That visit, subsequent visits with her pediatrician, a specialist, and even CT scans and MRIs revealed nothing wrong. Bailey began throwing up when she ate, and had trouble sleeping.

Jenny knew in her gut something was terribly wrong, but out-of-town specialists had long waiting lists and couldn't fit them in for several months. Finally, after Jenny talked with a friend who knew a neurologist, Bailey got an appointment at the local St. Jude Clinic for an ultrasound of her abdomen. It revealed a neuroblastoma tumor in her adrenal gland; she had cancer. She went into surgery the next day to have it removed and more tests run.

Bailey was diagnosed with OMS, a rare neurological autoimmune disorder that resulted when her body attacked the neuroblastoma tumor and got "confused" and started attacking her brain as well. It affects about 1 in 10 million children under age 5.

After connecting with an OMS support group online, the Merciecas learned about a world-renowned specialist in Illinois, one of only a few in the country. Jenny contacted him. That night, Bailey had a terrible rage attack - one of the symptoms of OMS - and was inconsolable. After trying to comfort her daughter for what seemed like forever, Jenny let her husband take her to another part of the house and Jenny emailed the specialist again in the middle of the night.

"I said we'd do anything. We'd drive up and sit in his office until he agreed to see us if that's what it would take."

The doctor called her the next day. Bailey began treatment on Oct. 17, 2012, and was walking again on Oct. 30.

She has finished cancer treatment but now gets steroids and other medicine to treat her OMS symptoms. Her parents keep her homebound to avoid potential infection and illness, which could cause a relapse of the most severe OMS symptoms. There is no cure for OMS, but many kids are able to come off treatment drugs completely around age 5 or 6. Longer-lasting effects aren't always immediately obvious.

"You don't really know how much brain damage she has, if any," said Jenny. "With OMS, it all depends on how many relapses there are and how severe they are, and how long it took to get a diagnosis to stop the attack on their brain. In the grand scheme of things we caught it early.

"I'm hopeful in the end she will have few issues and will be able to function on her own," said Jenny. "Driving and things like that, you just have to wait and see how her coordination is."

A new way of living

Life has changed in the Mercieca family. A dry erase calendar in the kitchen keeps track of Bailey's medications and injections. Baily's family members try to stay at home as much as possible to reduce the likelihood of bringing home an illness.

"We went from using cloth diapers to disposables because the chemo is excreted in fluids," said Jenny. "I have to wear gloves to change her."

The Merciecas said they are grateful to the response from the community for Bailey's Toy Drive, and grateful to the Child Life Program for providing the toys that distract Bailey when she comes in for treatments.