Giving hope to Sri Lankan children with disabilities & their families

This campaign is initiated by Angela Bettoni, a 22-year-old writer, performer and advocate with Down Syndrome, to help the Ayati Centre in Sri Lanka. Angela has a Sri Lankan mother and Italian father, and lives in Malta, having previously lived in Rome and Oxford. Angela is supported in this campaign by her parents, Dr Ramani Bettoni and Dr Andrea Bettoni.

Our visit to the Ayati Centre

We first heard about the Ayati Centre for Children with Disabilities last year, from a Sri Lankan friend whose daughter also has Down Syndrome. The centre is located about an hour away from Colombo (in Ragama), and although Angela was very keen to go and see the centre, we did not manage it at the time. This summer, Angela visited Sri Lanka again with her mother, and visiting Ayati was one of the priorities. Our friend contacted Ayati, who invited Angela to give a presentation to their staff, therapists, students, and visiting parents.

What is the Ayati Centre?

The Ayati Centre opened in 2020, just before the Covid pandemic. It is Sri Lanka’s first national centre for children with disabilities, which began as a public-private collaboration. Ayati provides a “one-stop shop”, with all services provided free-of-charge. These start from an initial multi-disciplinary evaluation and diagnosis, and lead to whatever form of therapy is needed by each individual child. They can include speech therapy, occupational therapy, physiotherapy, as well as devices that the child may need, like for alternative communication (AAC), hearing aids and mobility devices, to give a few examples.

Currently Ayati supports over 11,500 children, with wide spectrum of disabilities, including Down Syndrome, autism, cerebral palsy, hearing impairment, and other learning disabilities. The centre is located within the premises of the Faculty of Medicine, University of Kelaniya.

Our visit was arranged by Ranmalie Fernando, the very dedicated lady who has taken over the running of Ayati only 2 months ago as the Head of Facilities and Operations. After the event, two speech therapy students who were the same age as Angela gave us a tour of the centre. We saw the occupational therapy rooms, physiotherapy, speech therapy sessions, and the sensory room etc.

What will the funding from this campaign be used for?

The therapies and medical services at Ayati are all provided free of charge, by staff who are supported by the Faculty of Medicine, University of Kelaniya, the Ministry of Health as well as the Ministries of Education and Social Services.

However, the centre still needs money for many things they do. We would like to collect money for the following:

• To help towards transport costs for poor families, who bring their child once a month to the centre for therapy: currently each family can receive a maximum of Rs 3000 (about €8.50/$9.00) per month to help with the cost. For many day labourers, bringing their child also means loss of earning for the day. Sometimes, the trip can require an overnight stay if they are travelling from far, which would require paying for board and lodging in the nearby town.
• To provide meals for the child while at the centre: for a single child, providing breakfast, lunch and tea comes to ~Rs 600 (about €1.74/$1.80) per day. At present, the Centre can provide only one meal to 35 persons (child and one parent) each day, so as to offer the service to as many children as possible.
• To subscribe/buy the communication app Avaz Augmentative and Alternative Communication app, which is also available in Sinhala and Tamil languages, which even runs on very basic smart phones. Currently a monthly subscription costs Rs 1750 (about €5.00/$5.40) while a lifetime license costs Rs 27,999 (€80/$86).
• To help buy small equipment that may be needed by individual children (e.g. ipad/phone, specialist toys or speech therapy equipment, etc.)

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My feelings from the visit to the Ayati Centre – by Angela It was pretty strange for me to be talking to a whole room full of therapists because when I was little, I used to be the one who would go to therapy sessions with people like them. I used to be the child receiving all these treatments and therapy sessions. And now all of a sudden, from being the one receiving the therapy sessions, I became an equal. Being up there speaking to all these professionals, from being the child with Down Syndrome I became an adult. I became an advocate in full force. Showing who I am now. It was very emotional for me when we were given the tour of the centre and sometimes seeing the children who were going to their therapy sessions. I couldn’t help but think that those children could be me, that I was like that as well. Now I couldn’t believe it, that I didn’t realise until now that I had also struggled like that. That I had problems with my speech and other signs that were very clear that I was somewhat different to my peers when I was younger, and now, since I don’t have these struggles anymore, I have forgotten how I used to be back then. My ultimate dream and goal is that these children may have the same opportunities that I have had. I would also like to publish the memoir I have written on my first 18 years with Down Syndrome, because I feel that can make a huge difference for all of those in the Ayati Centre and for many other people here in Sri Lanka.

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This fundraiser has been registered under the Malta Public Collection Act (1979), Collection No. Coll 18, 2023.