After years of coping with cerebral palsy, parents start foundation to assist others

Scarborough Leader, June 4, 2010 | By David Harry, Staff Writer

Help for parents of children with disabilities grew bead by bead Saturday as the Robbie Foundation held its first fundraiser.

Named for Robbie Gierie, the 11-year-old son of Lynn and Robert Gierie, who was born with cerebral palsy, the foundation has been established to provide money for parents of children with disabilities to buy adaptive equipment and toys or pay for treatments not covered by insurance plans.

Lynn Gierie said the open house and jewelry sale held at the family home off County Road earned about $2,000 through sales of handmade jewelry and a raffle for various services provided by local businesses.

“We come to this with thankful hearts we can provide for Robbie, and we are hypersensitive to the unmet needs – items and services not covered by insurance,” Lynn Gierie said Saturday.

Lynn Gierie is a teacher at Loranger Middle School in Old Orchard Beach. Her husband teaches industrial arts at Messalonskee High School in Oakland and is completing his first year back in the classroom after taking a decade off to raise his son.

Cerebral palsy is the name given to a variety of disorders that affect muscle control and movement linked to the brain. Cerebral palsy may be the result of an injury during birth or later damage to the brain.

Robbie Gierie gets around in a wheelchair and communicates using computers. He attends Wentworth Intermediate School and took preschool classes at Morrison Development Center. He also receives a variety of speech and movement therapies to help broaden his movement and communicative abilities, in part because the Gieries said they have been able to get the insurance coverage or pay for what Robbie needs.

Physical therapist Cathy Bernard said Robbie needs family and caregivers for the most basic activities in each day. “We focus on trying to do things an 11- year-old boy can do,” Bernard said. After living in a duplex in Saco, Robert Gierie said the family moved to a home better suited to accommodating his son’s needs, but he knows parents of children with disabilities are not always able to make that move.

Basics such as a bicycle for a child with developmental or other disabilities can cost as much as $2,000 and not be covered by insurance, Lynn Gierie said. Robbie enjoys aqua and hippa (horseback riding) therapy and his mother said she would like to ensure parents can get access to therapies they need for their disabled children. Holly St. Onge, an occupational therapist who works with Robbie on things such as rolling over on his side, agreed with Lynn Gierie’s assessment of what families may face.

“Income is a big factor in insurance coverage and care received,” she said. After Robbie made his mother a necklace for Christmas last year, the family conceived the idea of selling jewelry he makes through the “hand over hand” method to fund a foundation to help people buy what is needed to improve the quality of life for disabled children.

Therapist Jim McMillan said the method is literally guiding Robbie’s hands to string the beads. McMillan and therapist Jennifer Greene use the method of spacial dynamics to help Robbie understand the relationship of his body to his surroundings, McMillan said.

Visitors to the open house chose from more than 100 pieces of jewelry – earrings, bracelets and necklaces made by Robbie and six volunteers led by Lynn Gierie’s sister, Lise Foster.

“He just started making things and people started helping,” McMillan said. Lynn Gierie estimated at least $20,000 will need to be on hand before the foundation can begin taking applications.

Robert Gierie said the foundation is setting up a board of directors and the couple hopes to raise at least $100,000. “This has opened our eyes to all the other barriers,” Robert Gierie said. The open house drew the roster of caretakers who work with Robbie and provided plenty of detail about the challenges he and other children and parents face.

Speech therapist Shannon McFarland of Bath-based Pine Tree Society said even when services for speech or physical therapy are covered by insurance or services, navigating the channels to get help can be tricky.

The Pine Tree Society provides a variety of services at the Nonesuch River Plaza on Route 1, and McFarland said cerebral palsy patients can sometimes be helped most by patience.

“It can be as simple as waiting, giving them time to answer,” McFarland said because cerebral palsy slows speech. Robbie often communicates through software or electronic switches indicating his answers to simple questions, but software can be expensive, McFarland said.

To learn more about the Robbie Foundation or to contribute through Paypal, visit robbiefoundation.com. Contributions can be mailed to:

Robbie Foundation
P.O. Box 1534
Scarborough, ME 04070