In her short life, Ruby Olinsky-Paul, the five-year-old daughter of Woodstock area residents Ronda and Todd Olinsky-Paul, has exceeded the expectations of everyone around her — from parents, relatives and friends to those in the healthcare community. Born with a serious brain injury, she underwent extensive brain imaging at Mount Sinai Hospital, where she was placed in the arms of her parents by a neurologist there who told them to “take her home, keep her warm and dry and make sure she is fed.” The Olinsky-Pauls did quite a bit more than that.
Assembling a team of professionals who could provide the child with a broad array of therapies — a physical therapist, an occupational therapist, a speech pathologist, a feeding specialist to treat the child’s severe feeding disorder, and a hearing specialist — the couple have helped Ruby learn to walk, communicate on a basic level, process visual information despite a severe cortical impairment, and relax her spine and body that are the size of a small three-year-old’s.
Not surprisingly, a considerable amount of this treatment is not covered by Ruby’s Medicaid insurance or the Olinsky-Paul’s separate health insurance policy. And there is still so much more that Ruby currently needs and is not getting, according to her parents, who have been selling their possessions on eBay and Craig’s List to pay for the uncovered medical expenses.
When Ruby was younger, she worked with a therapist who specialized in sensory processing disorder, a condition that affects everything from her ability to eat and take medicine to the way clothing feels against her skin. She hasn’t had a specialist in this type of therapy for the past six months. Ruby also needs a sign language teacher to help her communicate with her parents because her speech is impaired. But probably at the top of the list is the Feldenkrais therapist who works with Ruby using a variation of the movement re-education method that has enabled the little girl to do something as simple as raise her arms over her head. She hasn’t been able to see this therapist for six months as well. And Ruby needs a new pair of $1200 pediatric orthotics that have worked so well for her and offered an alternative to the leg braces that were recommended by other specialists. The child has had surgery in both eyes and more may be required. Oh, and there’s an electronic touch device that will aid her communication. Her parents were initially told she wouldn’t be able to use it but within a half hour of working with it, Ruby had mastered the costly hand-held piece of equipment.
The time is now
“When you transition out of early intervention services, everything changes,” says Todd Olinsky-Paul, who works at the Pace Energy and Climate Center in White Plains, commuting three days a week to his job and telecommuting from home two days. “Unfortunately, I have one job to cover four people and it doesn’t pay for all of these bills.” At the time of his daughter’s birth, Olinsky-Paul was a graduate student in Bard College’s Environmental Policy Program.
“We have to do this now,” interjects his wife, Ronda. “The two years we lost of sign language and the six months we lost of [Feldenkrais] are so painful. We want to give her every opportunity we can.”
Ruby’s parents say it is critical that their daughter continues to get her intensive therapy and medical care while her brain is still developing has the potential to rewire itself. “It’s amazing how she is able to learn if she has the right therapy and right equipment,” says her father.
Now, local DJ Dave Leonard has come to the family’s aid. On Saturday, March 6 at 6 p.m. at the Bearsville Theater in Woodstock, Leonard will host his 15th annual “Pisces Party” dance event to benefit Ruby. The dance party will feature Professor Louie and the Crowmatix, the harmonies of the vocal group Prana, DJ Wa and DJ Truckpile, accompanied by laser lights and a visual extravaganza provided by Evolving Media. A silent auction of goods and services will include dinners at area restaurants, gift packages from area wine shops, spa treatments, art from area artists, and tickets to Levon Helm’s Midnight Ramble and Mountain Jam VI. The doors open at 6 p.m. with Prana taking the stage first, followed by Professor Louie and the Crowmatix and the DJs taking over after that. Admission is $15 and all proceeds from the evening will benefit Ruby.
At a featherweight 28 pounds, Ruby has a sunny personality and captivating elfin looks that belie the seriousness of a condition that will require treatment for years to come. Sitting at the family’s dining room table, she proudly extends her foot on the table in front of her to display a pink sock, a movement that would have been unthinkable just a year and a half ago as she was learning to walk with the use of the child-sized walker. She is fully cognizant of the world around her in spite of the cortical visual impairment that impedes communication between her brain and her eyes, leaving large chunks of the world blank. Oblivious to what the future may hold for her, she eagerly joins in the conversation, interjecting a word here and there to show she has been listening, Even though she is of kindergarten age, Ruby did not attend school this year because of her fragility.
“Every winter she gets sick and even if it is a simple cold, she stays sick for a long time,” says her mother, adding that Ruby was kept out of school and away from contact with this season’s germs at the advice of the child’s physicians. Last winter, the child had to be hospitalized after getting sick and became dehydrated, losing four pounds that, in her case, was life-threatening.
The blackboard in the family’s kitchen says it all. Ruby’s parents painted a wall with black chalkboard paint so they could maintain a current schedule of medical appointments, therapeutic treatments and medications. Ruby and her three-year-old brother Max are permitted to draw on the bottom half but the top half is reserved for Ruby’s health regimens and it is full.
“She is so unusual,” says her mother. She is referring to her daughter’s progress as opposed to the uncommonly engaging personality that could easily launch any mother on an uncontrolled bragging binge. “For a child with such profound disabilities, she is so able to learn.”
The lack of oxygen to Ruby’s brain at birth caused a condition known as fetal acidosis. In addition to microcephaly (a neurodevelopmental disorder leading to an abnormally small head due to the failure of the brain to develop properly) as well as vision and hearing disorders, Ruby also suffers from cerebral palsy, a seizure disorder, and a long list of medical and developmental challenges. But her mother, who has given up her practice as a certified midwife to oversee Ruby’s care full time, says all of the child’s physicians, teachers and therapists are at a loss to explain how a child with such a profound brain injury has progressed so far beyond what anyone could have anticipated.
Donations to the silent auction can still be made by contacting Christi and David Nelsen-Epstein at 679-2257 or by emailing Christi.firstname.lastname@example.org. Individuals wishing to make a cash donation via PayPal can do so at the website the Nelsen-Epsteins maintain for Ruby: www.goRubygo.com or can mail checks made out to Go Ruby Go, care of Ronda Olinsky-Paul, PO Box 1213, Woodstock, NY 12498.++