“Ayati changed our lives”
‘Ayati’ is not just ‘mother’ to thousands of special children from all corners of Sri Lanka but also to their parents and families.
With 14,800 children registered with this state-of-the-art ‘Ayati Centre for Children with Disabilities’ in Ragama and where around 60 children and their parents walk in daily to what is considered their home away from home, an urgent call is going out for a helping hand. (See box)
We visit Ayati which means ‘hope’ in Sanskrit on September 23 and see a major change in the mindset of parents – three mothers and one father – stalwarts, representative of many more. It is empowerment!
As they identify themselves and their precious little ones and say without hesitation that they may be photographed, the change for the better in battling stigma and moving forward to get the best of the best for their children, like all parents strive for, becomes obvious.
For, the Sunday Times has been campaigning for the rights and dignity of special children for many decades and has also been following Ayati’s journey closely since the formation of the Ayati Trust in 2016 and launch of the centre in 2020.
It was 2019 and Taniya Arsakulasuriya and her husband from Negombo were expecting their first baby. The pregnancy was fine until 33 weeks when her water bag burst and Aanya was born. It was a difficult birth, for there had been a placental abruption (the placenta separating from the uterus or womb wall and disrupting the flow of vital oxygen to the baby’s brain).
“My baby was like a bonchi karala. She was also not breathing when born,” recalls Taniya, as the vigil began. Her daughter’s condition was Cerebral Palsy which affects movement, posture and cognitive function. The baby was on life support and in the incubator. It was one long month in the hospital inclusive of 15 days on the ventilator.
From top left: The sophisticated sensory room; Shanika & Angelic; Vinitha & Shalomi and (bottom left & right) Taniya & Aanya; and Tharindu, wife & Lydia. Pix by M.A. Pushpa Kumara
Taniya and her husband struggled to come to terms with it. There were days which were okay but there were also days when they were very down. It was when Aanya was five months that they met Ayati’s Clinical Lead Prof. Samanmali Sumanasena, Professor in Disability Studies at the Faculty of Medicine, University of Kelaniya & Consultant Paediatrician, who suggested a calm environment and system stimulation.
Prof. Samanmali Sumanasena
Now Aanya is six and goes everywhere with her parents – family gatherings, parties, weddings et al. With her cute ankle-foot orthoses (AFOs), a particular type of shoes, other children gather around her.
No question from any adult or child about Aanya goes unanswered by Taniya, who also smilingly says that there are daughter-mother tussles, especially when Aanya does not go to sleep at night.
“Ayati changed our lives,” says Taniya, adding that now they have a strong network of parents who share information and act as a bulwark when negative emotions overwhelm a family.
Similar but at the same time unique life stories come forth from Shanika Ruwan Kumari whose honeymoon baby Angelic was born at 37 weeks. She too is living with Cerebral Palsy.
“Doni now eight years old, goes to Montessori,” says Shanika who lives in Tewatte, showing us photos of medals she has won and concerts she has taken part in.
For Tharindu Senadhith and his wife living in Ragama, Lydia was the sixth baby after five miscarriages. Born at 32 weeks with Down Syndrome (also known as trisomy 21, it is a genetic condition caused by an extra chromosome. Usually, babies inherit 23 chromosomes from each parent, adding to 46 chromosomes, but some babies have three chromosomes at position 21, instead of the usual pair, adding up to 47).
“Lydia was in the baby room for a month,” says Tharindu, showing with pride photos of her now, five years old, in school uniform on his phone.
It is the third child of Vinitha Nilmini from Veyangoda who is with her that day. Shalomi, soon after birth, did not drink milk and also had been in the baby room. Malnourished and stick-like she became. It was when a doctor told Vinitha: “Mae baba, apey nemey, oyalagey daruwa. Ithin hondata balaganna oney,” she and her husband resolved to do their best for their little girl born with Down Syndrome.
All these parents, while certain that they themselves were “chosen” to get these special children to come into their lives and homes, pay heartfelt tribute to “extraordinary” Ayati and its well-organized system. It also goes that extra mile – providing meals and a travel allowance for anyone who requests them.
The appreciation for Ayati’s Prof. Sumanasena and the multidisciplinary staff flows naturally, as they say in one voice that each and every child and parent is treated with empathy and dignity.
| Renovations, upgrades, urgent needs | |
| A repair here, a leak-fix there and dabs of paint all over are what the 42,000 sq.ft Ayati on 2 acres needs urgently. “We need Rs. 30 million for renovations and upgrades at Ayati,” says Chief Executive Officer Dhananjaya Rajapaksha, encouraging corporates to make contributions through corporate social responsibility (CSR) partnerships and sponsorships. Donations can be made by accessing: https://www.ayati.lk/donate or to the Ayati bank account. The bank account details are: Account Name – Ayati Trust Sri Lanka; Account No – 0080537741; Name of Bank – Bank of Ceylon; Bank Code – 7010; Bank Branch – Ragama Branch; Branch Code – 764; SWIFT Code – BCEYLKLX
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| Working under one roof for special children | |
| Ayati, the long-term sustainable initiative that helps children with disabilities to become productive, integrated members of society, was established by the Ayati Trust Sri Lanka, incorporated by the University of Kelaniya, Hemas Holdings, MAS Holdings and the Wijerama Family Foundation. Twenty percent of Sri Lankan children (1 in 5) are living with a disability, while 1 in 93 children has been diagnosed with autism, says CEO Dhananjaya Rajapaksha, detailing the facilities at Ayati. These include: assessment; intervention; provision of basic vocational/life-skills training; training & counselling for parents; and conducting much-needed research. On a walkabout around purpose-built Ayati, we see an array of services including speech and language therapy, physiotherapy, occupational therapy, rehabilitation facilities, counselling and even a unit to produce accessories such as prostheses and assistive devices. Among the latest additions are Sri Lanka’s first sensory room and an ultra-modern audiology unit. Acting as a multi-disciplinary training centre for the next generation and research hub, the beauty of Ayati lies in clinicians from the Faculty of Medicine, University of Kelaniya, and the Health Ministry working in tandem under one roof for Sri Lanka’s special children, showing them that they care.
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