WHITMAN — The Feeney family is grateful this holiday season as they envision 2019 as a more tranquil year.
Their hearts are full of love for their three girls: Shelby, 5, who has Charge Syndrome and twin girls Tamsin and Elyse who are six.
Settling in their newly renovated, handicapped accessible home Dan and Nicole are also expecting the birth of their baby boy Rhys (pronounced Reese) any day. The name is Welsh for enthusiasm.
Summing up the adventures of this past year the girls were eager to show off their new house. The playroom now an open floor plan with cozy spots for all three is accessible for toys and storage.
Charge Syndrome has significantly affected Shelby’s vision and hearing. She is diagnosed as deaf blind. She uses a gait trainer, which she can get in and out of by herself but she is developmentally delayed and walks only with assistance.
Although she will not continue to lose her current level of hearing and vision, it will not improve. Through occupational therapy they are able to maintain her present ability with hearing implants and glasses as well as strengthening her muscles.
Shelby and her family speak and use sign language to communicate. She doesn’t use Braille because of a tactilely defensive response. It has prevented her from wanting to touch things a common trait in Charge Syndrome.
She has a sensory swing that is supported by a ceiling beam for indoor play during cold weather and also for decompression. She explores her world using her other senses with a current favorite toy: her yellow giraffe and a light up sensory board that sings.
Feeney hired a universal designer: a company called Beige and Bleu who handled the functionality and aesthetics making the home truly accessible to Shelby’s needs. That work, along with an accessible van and travel for medical treatments have been aided by a Go Fund Me page (https://www.gofundme.com/shelbys-home-van-and-medical-trip) that has raised $44,891 of a $63,541 goal through donations by 298 people over the past 15 months.
“It’s amazing. It’s perfect,” said mom Nicole.
The days are long for Shelby who attends the Perkins School for the Blind. Her basic daily needs such as bathing; dressing and toileting will become slightly easier as they have the equipment to keep her safe.
A half bath with a full changing station allows Nicole to dress Shelby instead of laying her on the floor. With an accessible entry way there are zero thresholds throughout the house, which will allow her to use her walker freely. The insides of each doorframe are painted bright yellow for way finding.
The upstairs bath is fully accessible with a teak bench for her to be washed safely. She cannot care for herself so the burden is eased as both parents happily get accustomed to the new normal of proper equipment.
They no longer have to transport Shelby up and down the steep, winding stairs, which as she grows has become unsafe. She is buckled in a remote stair lift chair, which allows her to ride up instead of being carried.
Colors that assist with visional depth perception were also used in blending color schemes and wood flooring.
Knobs are difficult for people with disabilities to operate so the kitchen has all pull hardware and lower level drawers for easier access.
The couple had a zoning board of appeals hearing in May after their story went public when a neighbor disputed their request to build a wheel chair ramp. As a result there was an outpouring of support and donations of material and manpower to complete the renovations. The family offered their thanks to local Whitman residents: finish carpenters Bob Ells, electrician Bob Brown and Bellew Tile of Rockland who donated all the tiling for the upstairs bathroom. There are several other anonymous donors who the Feeney’s also graciously acknowledged.