Amanda Hamacher was in grade school when she began to lose her sight and hearing as a result of a rare genetic disorder called Alstrom syndrome.
Now, the 21-year-old cannot see and has severe hearing loss.
Yet, she enjoys a newfound sense of freedom thanks to a program sponsored by the Brantford-based Canadian Deafblind and Rubella Association, Ontario Chapter.
Hamacher, who was raised in Plattsville, and a deafblind roommate share a house in Brantford where they can achieve a sense of independence while still receiving 24-hour intervention services.
“It’s great. I do a lot more now,” she said, relishing the accomplishment of being able to do her laundry.
“I’ve been able to get out and do more things and have new experiences,” including line dancing and bowling, she said.
Hamacher, who finished high school last year, communicates well verbally because she did not begin to lose her sight and hearing until she was about 10.
Others of the agency’s clients, such as Rena Pollock, 39, communicate solely through sign language.
Pollock has been deafblind since birth -although she has some residual sight and hearing -as a result of congenital rubella syndrome. She does not speak.
The syndrome is associated with children born of mothers who had contracted rubella (also known as German measles) while pregnant. Immunization against rubella largely halted the incidence of both the disease and congenital rubella syndrome.
Pollock was born in Vancouver but lived at W. Ross Macdonald School in the deafblind residential program from the age of 4 to 21.
Deafblind people rely heavily on intervenors. They are trained to act as the eyes and ears of a deafblind person, help them communicate, and interpret information from the world around them.
Intervenors are essential for adults such as Pollock and Hamacher, as well as for children suffering from deafblindness.
“Without intervention services, it’s a dark, silent world,” said Cathy Proll, executive director of the nonprofit Canadian Deafblind and Rubella Association, Ontario Chapter.
The national agency began in the early 1970s in response to the needs of children afflicted with congenital rubella syndrome, and saw its mandate expand to address the changing needs of those children as they became adults.
Genetic disorders, such as Alstrom syndrome and CHARGE syndrome, also cause deafblindness and the agency has reached out to support these individuals and their families as well, Proll said.
The association has always maintained a close working relationship with W. Ross Macdonald School, which is the only school in Ontario with a residential program for deafblind children, Proll said.
Deafblindness is a low-incidence disability. However, the aging population may bring a new clientele to the agency, as the numbers of elderly with both hearing and vision loss increases, she said.
The agency will soon drop the word rubella from its name, becoming simply the Canadian Deafblind Association to better reflect its services for all deafblind people and the near non-existence of congenital rubella syndrome since immunization became routine.
The agency is also in the initial stages of an ambitious fundraising plan called Project 2011. Organizers envision building a centre to house offices, an intervenor training centre and space for providing services to clients, Proll said.
The agency is planning to boost its community profile to showcase what it has to offer and to increase awareness of deafblindness.
“We want people to know who we are and what we do,” Proll said.
The first step was a flag-raising event held on Monday outside city hall to celebrate June as Deafblind Awareness Month.
June has been chosen worldwide as the month to highlight deafblindness because it was the birth month of Helen Keller, the deafblind American born in 1880, whose inspiring life story captured the hearts of millions.
© 2009 , Sun Media