About 30 people cheer along the sidewalk across from East Gresham Grade School as Bonnie Burch crosses the street.
The 8-year-old beams as her mother and grandmother guide her to an event held in her honor, Eat in Street with Bonnie.
At a card table under a tent, her grandmother fills a large syringe with blended food and feeds it to Bonnie through a tube in her stomach.
Since kindergarten, Bonnie has been fed this way at school by nurse's aides. But Tuesday, Feb. 26, Multnomah Education Service District told Bonnies family she would have to be fed off campus because her feeding method was no longer considered safe.
Friends, family members and activists gathered for an eat-in Wednesday, March 20, to show their support for Bonnie and make a statement to MESD and the Gresham-Barlow School District: They want Bonnie to be fed in the school with her classmates, just as she has been the past four years.
Im hoping the MESD nurses can see that there are alternative ways for tubies to eat, said Beverly Hanset-Burch, Bonnies mother and the president of a non-profit Blended Food Resource Group. The way Bonnie is fed is not only perfectly acceptable, but its the healthiest and keeps her well.
A vibrant little girl
Bonnie was born with arthrogryposis, a congenital disorder that manifests itself in many different ways, and her family was told when she was born she wouldnt be able to sit up in a wheelchair.
But the child proved doctors wrong. Seeing her daughter walk through the house makes Hanset-Burch and her husband, Jerry Burch, believe Bonnie could one day do many things no one thought possible, including eat whole foods.
Bonnie has fished for salmon on the bank of Big Creek River, traveled to Finland to meet people with the same condition as her through a contest and made friends of all ages.
Kids say, Hi, Bonnie! Hi, Bonnie!, Hanset-Burch said. Shes just this vibrant little girl. How would you like to lose time with your friends day in and day out? Lunch is her social time.
The kids used to play a game of asking what was in Bonnies blend each day, Hanset-Burch said. Shes doing so well. Why would we want to rock the boat?
For the past four weeks, Hanset-Burch, Burch and Bonnies grandmother Bea Close have arrived at East Gresham Grade School at 11:30 a.m. to feed Bonnie.
They take Bonnie off campus grounds with a card table and propane heater, trying to make lunchtime as normal as possible for the third-grader.
At first it was fun because mom and dad were there for lunch, Hanset-Burch said.
But after the few first days, Bonnie became frustrated and struggled in her classes, missing the time at lunch with her peers.
I dont want my daughter existing, Hanset-Burch said. I want her thriving.
MESD and district response
Because of confidentiality, MESD spokesman Mark Skolnick and Gresham Barlow School District spokeswoman Athena Vadnais could not comment on the specifics of Bonnies case.
How medical procedures –– feeding protocols, insulin injections, seizure responses and the administration of medications –– are carried out in school districts is determined by MESD school nurses, Vadnais said.
Gresham-Barlow will not permit a staff member, parent or caregiver to carry out a procedure in the schools a medical professional has deemed unsafe, she said.
A statement released by MESD says that MESD nurses follow practice guidelines to ensure the safest procedure is used. Nursing practice supports gastrostomy tube feed by gravity or through a pump, but not the plunge method.
According to the statement, the plunge method, which MESD nurses no longer use in a school setting, requires continuous, forceful pushing of the syringe to administer.
When thick blended food is forced through a tube using a plunger, a primary concern is that by forcing the plunger, the person feeding the child is unable to determine if a blockage is present. A blockage could mean that the tube placement has been dislodged, leading to injury to the abdominal cavity, peritoneum or stomach wall, the statement says.
But Rebecca Adams, a consulting school nurse in Eastern Oregon whose son is plunge fed, said she had seen very little information to deter her from thinking the plunge method was safe.
There was a time when children with certain disorders were placed at institutions, Adams said. Now theyre in theyre homes, and families want to feed them like they feed the rest of their families.
I have several students who have done blended feeding with great results, she said. The families are very happy, and we havent had any troubles.
On Wednesday, supporters from throughout the Portland Metro area showed up for Bonnie, including representatives from the Vancouver-based nonprofit organization, Differently Abled, Nationally Accepted (DANA).
Wed like to see her life restored to as she knew it, said Dionna Standridge, founder of DANA, who was accompanied by her granddaughter Kennedy.
Kelley Schaperjahn, a Gresham resident who was born with the same disorder as Bonnie, said the little girls situation hit home. She recalled sometimes feeling separated from her peers for P.E. or lunch.
For Kerri Derrevere and the Shane family, Bonnies story brought up concerns of what their young children, Owen and Keira, will experience when they reach school age. Both children are fed the same way Bonnie is.
Its very upsetting, said January Shane, Keiras mother, said. I think of what Id do if that were Keira. (Bonnie is) made to feel like an outsider –– an outcast. Its not right.