Kendyl Lawry-Bruffy, 3, enjoys the slide at her grandparents’ house in Quincy on Jan. 24. Kendyl has a rare, often debilitating 1 in 10 million disease that afflicted her almost two years ago but now appears to be under control.Photos by Laura Beaton
Each year about 10 children in the U.S. are affected by opsoclonus myoclonus ataxia. An immune system disorder, OMA is also known as dancing eyes or dancing legs syndrome.
OMA is a rare autoimmune disease that primarily attacks toddlers. It attacks the central nervous system, affecting a child’s ability to walk, talk and do most other things for which toddlers are famous.
At this time there is no known cure, but certain treatments have proven to be helpful to check and stabilize the disease.
Kendyl Lawry-Bruffy, 3, was diagnosed in February 2011 with the disease, which had stumped several doctors from area hospitals even after spinal taps, MRIs and many other tests were administered.
Kendyl’s symptoms included uncontrollable fluttering eyes and jittery legs, inconsolable crying and loss of muscle control to the point where she could not even sit up.
She was unable to walk or crawl. Kendyl’s mom, Aubrey Lawry, was frantic to help ease her daughter’s pain and to find out what was wrong.
Eventually, with much thanks to her mom’s strong advocacy, Kendyl’s condition was diagnosed after she was flown to Stanford’s Lucile Packard Children’s Hospital in Palo Alto.
After many weeks of not knowing what was wrong with Kendyl, finally a diagnosis was obtained.
A treatment plan was developed and implemented, and after much trial and error, things began to run smoothly and Kendyl’s rehabilitation began.
Kendyl went to Palo Alto for monthly intravenous immunoglobulin (antibody) G infusions to combat the deadly disease. IVIG is a blood product derived from antibody extraction from the plasma of more than 1,000 donors.
She also received infusions of rituximab, which targets and destroys B-cells. The B-cells make antibodies that can attack the brain, causing inflammation and OMS.
In addition, Kendyl received daily steroid treatments that sometimes caused “steroid rages.”
Lawry fought to get a port implanted in Kendyl after doctors and nurses had trouble finding veins that could receive the infusions, which took up to 10 hours for a single session.
Lawry learned that Plumas District Hospital, without a pediatric ward, was not fully equipped to administer the necessary treatments.
That’s when the family began their monthly sojourns to Palo Alto for treatment and doctors’ visits. Lawry and her parents established a routine for Kendyl’s treatments and everything was finally running smoothly.
Now doctors have decided to take Kendyl off steroids and wean her from the rituximab. After two weeks of neither drug, Lawry is unsure of the effects on her daughter. The family is anxiously observing Kendyl and monitoring her health and behavior.
Single mom Lawry acknowledges that Kendyl has made great strides since her initial diagnosis. She said the community really got behind her and Kendyl.
A benefit dinner hosted by E Clampus Vitus and VFW Post 3825 in June 2011 netted $3,100 for Kendyl’s medical expenses. Lawry is very appreciative of the help. She now has MediCal and CCS insurance, which covers most of Kendyl’s medical expenses.
Kendyl is enrolled at Plumas Unified School District’s special day class located next to Feather River College’s early childhood education center.
The bus picks Kendyl up at her home every weekday at 8 a.m. and takes her to school. There, she works with both speech and occupational therapists in addition to teachers and aides.
Her grandfather, Robert Lawry, accompanies her during school hours and assists her throughout the day. He spends most afternoons with her as well.
Kendyl still needs lots of attention. Although she is very active and agile, doctors are unsure if there will be long-term neurological or developmental effects.
Lawry said Kendyl has some disabilities as a result of her 1 in 10 million disease. It appears that she is about six – eight months regressed developmentally. She still has occasional rages and cannot always sleep at night.
“Some days she’s wobbly and her balance isn’t so good,” Lawry said. “It’s a day-to-day thing. We’ll see how weaning her off drugs will go.”
Both of Lawry’s parents are very involved in Kendyl’s life, as is her grandmother, Lawry said. The three families live close by each other, making Kendyl’s care so much easier.
“She’s exhausting. She’s very, very curious, very high-energy. A pretty normal 3-year-old,” Lawry added.
Lawry recently celebrated a one-year milestone at her job in medical records at Plumas District Hospital. She is thankful for the understanding and support she receives from supervisors and staff.
She credits her tight-knit family for helping her and Kendyl pull through the past two difficult years. OMA is a very intricate disorder, and so rare that there is little information available.
Most children contract the disease at 11 – 13 months. Some have been known to get better, Lawry said, while others have died.
She said that if anyone has questions or needs help in dealing with a similar situation, they may contact her at firstname.lastname@example.org.
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