Miss-Delectable
New Member
- Joined
- Apr 18, 2004
- Messages
- 17,160
- Reaction score
- 7
http://westcoaster.ca:8080/modules.php?name=News&file=article&sid=700
She was born deaf.
She still can’t speak.
And she’s going blind.
Alicia-Anne Seitcher’s just 10, but her life will get tougher unless a specialist can help her with speech, social-integration and academic training this summer, say a care worker and family member.
Lou Lefebvre, an intervener in Ahousaht, said the situation’s growing urgent because Alicia-Anne is expected to go fully blind by 13, and funding for school-based speech programs end in June.
Alicia-Anne still only communicates through gestures and sign language.
“She relies 95 per cent on her eye sight right now for communication,” said Lefebvre.
“We need a summer program.
“If she doesn’t have an intervener in the summer, we’ll lose everything we’ve got.”
Lefebvre said the summer programs will cost $25,000.
Alicia-Anne was born Feb. 19, 1996 with Usher syndrome, a rare inherited disorder in which a patient loses hearing and sight.
Patients usually lose their hearing at birth and their eye sight in their teenage years when the retina deteriorates.
Alicia-Anne lives with her single father, employed as a drywaller and carver, and three brothers.
At age five, she received a cochlear implant.
She is still learning to hear and speak and goes to school at Maaqtusiis school.
A March 8 email from Gerald Harris, a deaf and blindness consultant, said doctors were recently startled to learn Alicia-Anne is losing her vision rapidly.
“We have maybe not many years to prepare her for blindness,” he said.
Lefebvre said that’s why summer work is essential.
Naomi Seitcher, Alicia-Anne’s cousin, said no funding is available from Ahousaht’s band council, the Nuu-chah-nulth Tribal Council or USMA.
She said she’s sending letters to NDP MLA Scott Fraser and Conservative MP Dr. James Lunney.
“We need to ask them why we can’t fund these programs for Alicia-Anne and other kids with disabilities,” said Seitcher.
“She shouldn’t have to struggle.
“It’s just hard to see my uncle go through this. He doesn’t want to move.”
The work doesn’t end in the summer, added Lefebvre,
She said family and community members must also be taught how to communicate with Alicia-Anne, but that’s a different program needing different funding.
In the meantime, friends and family members are working on raising funds for the $25,000 summer programs.
A fundraising barbecue, live entertainment and a silent auction are scheduled for Tofino’s Village Green May 27.
Donations for the auction are needed.
The Alicia-Anne Seitcher Education Fund has also been established out of the Ahousaht Holistic Centre. Donations can be made by contacting Lefebvre at 725-3880 or Darcy Lefebvre at 725-2791.
She was born deaf.
She still can’t speak.
And she’s going blind.
Alicia-Anne Seitcher’s just 10, but her life will get tougher unless a specialist can help her with speech, social-integration and academic training this summer, say a care worker and family member.
Lou Lefebvre, an intervener in Ahousaht, said the situation’s growing urgent because Alicia-Anne is expected to go fully blind by 13, and funding for school-based speech programs end in June.
Alicia-Anne still only communicates through gestures and sign language.
“She relies 95 per cent on her eye sight right now for communication,” said Lefebvre.
“We need a summer program.
“If she doesn’t have an intervener in the summer, we’ll lose everything we’ve got.”
Lefebvre said the summer programs will cost $25,000.
Alicia-Anne was born Feb. 19, 1996 with Usher syndrome, a rare inherited disorder in which a patient loses hearing and sight.
Patients usually lose their hearing at birth and their eye sight in their teenage years when the retina deteriorates.
Alicia-Anne lives with her single father, employed as a drywaller and carver, and three brothers.
At age five, she received a cochlear implant.
She is still learning to hear and speak and goes to school at Maaqtusiis school.
A March 8 email from Gerald Harris, a deaf and blindness consultant, said doctors were recently startled to learn Alicia-Anne is losing her vision rapidly.
“We have maybe not many years to prepare her for blindness,” he said.
Lefebvre said that’s why summer work is essential.
Naomi Seitcher, Alicia-Anne’s cousin, said no funding is available from Ahousaht’s band council, the Nuu-chah-nulth Tribal Council or USMA.
She said she’s sending letters to NDP MLA Scott Fraser and Conservative MP Dr. James Lunney.
“We need to ask them why we can’t fund these programs for Alicia-Anne and other kids with disabilities,” said Seitcher.
“She shouldn’t have to struggle.
“It’s just hard to see my uncle go through this. He doesn’t want to move.”
The work doesn’t end in the summer, added Lefebvre,
She said family and community members must also be taught how to communicate with Alicia-Anne, but that’s a different program needing different funding.
In the meantime, friends and family members are working on raising funds for the $25,000 summer programs.
A fundraising barbecue, live entertainment and a silent auction are scheduled for Tofino’s Village Green May 27.
Donations for the auction are needed.
The Alicia-Anne Seitcher Education Fund has also been established out of the Ahousaht Holistic Centre. Donations can be made by contacting Lefebvre at 725-3880 or Darcy Lefebvre at 725-2791.