AASHRAYA – a support group for children with blinding eye diseases
There are about 3 lakh blind children in our country. The most common blinding eye diseases are childhood cataracts, retinal dystrophies, cortical vision impairment and retinopathy of prematurity.
Parents of children with blinding eye diseases may feel all alone in their efforts to raise a child with visual disability. They may suffer immense psychological stress because of this. This group hopes to offer the opportunity to talk to others; share common concerns, frustrations, and stories; and find solutions to vision-related difficulties.
Aashraya was created with the intention to create a close knit community of parents with similar burdens, worries and hopes. Nothing eases the burdens of one’s life, than knowing that there is someone out there, who has similar problems.
Aashraya could also be a place where your children meet others like themselves, and where they can feel at home. It is important for a child to know that there are others like him/her out there, facing the same problems as he/she is; this feeling can raise the child out of the depths of self pity and anger and provide the courage to bear his/her illness with dignity and optimism.
Being surrounded by other people who have undergone a similar treatment, can also reduce post operative stress and anxiety. A word of encouragement coming from such a person could truly put one to ease. It also improves the trust one has on the surgeon.
Here you have the opportunity to not only receive help, but also to provide it. Parents and older children can step into counselling and supporting roles, as they develop their communication skills and learn the value of empathy.
Aims of the support group
Psychological support after the diagnosis has been made, thus helping to manage stress and anxiety
Help patients to communicate with people having similar problems, so that they can develop an understanding of the situation and know what to expect.
Vision rehabilitation to help in maximizing the usable vision
Provide parents with educational advice for their children and try to fit them in appropriate schools
Provide knowledge of the government available schemes for the visually disabled
Try to provide financial aid for surgeries/rehabilitation
Facilitators of the support Group
Group coordinator, Optometrist, Rehabilitation technician, Pediatric ophthalmologists, special educator, Clinical psychologist, volunteers (parents/care-givers of the patients) and anybody who is interested in helping visually disabled children
Aashraya has the following sub groups
- Support group for children with childhood cataracts
- Support group for children with retinopathy of prematurity
- Support group for children with cortical vision impairment
- Support group for children with retinal dystrophies
How you can help
If you are a parent with a visually impaired child, you could volunteer to be a part of Aashraya and help in counselling the parent by sharing your experience with them.
Pediatric cataract surgery under GA – Rs 35,000 per eye
Baby friendly glasses – Rs 8000
Therapies for children with cortical vision impairment and multiple disabilities – Rs 20,000 for 1 month
Low vision devices - Rs 10,000 to 1,00,000.
ROP screening – Rs 5000 per child
ROP treatment – Rs 40,000 per child