Help Provide Care for Arali

Arali Ehara De Sylva is the only daughter of Romesh and Subani De Sylva. After failing to conceive naturally, they resorted to IVF. Finally on the 1st of May 2004, Arali was born. Her name means Frangipani in the Sinhala (Sri Lankan) language

Arali did not achieve the key developmental milestones like most other babies would achieve. She was one year and 5months old when she started walking. When Arali began to display epilepsy like symptoms: such as rolling her eyes, eyelid flutters staring at patterns, Romesh and Subani sought medical advice. After an EEG, Arali was diagnosed with Epilepsy, and at nearly 2 years old she was placed on anti-epileptic drugs. Despite this setback, Arali was a happy and loving child full of life and a contagious smile. To this day, Arali is non-verbal but she has a good understanding of her environment, recognise, and interacts with close family and friends. She loves swimming, dancing, and music - particularly Michael Jackson and The Wiggles.

When Arali was 3 1/2years old, her parents decided to migrate to Australia because she was often becoming ill with respiratory infections. In 2007, they relocated to the Gold Coast to escape the cold, windy weather of Wellington.

In Australia, Arali was taken to multiple specialists and therapists to find out why she was non-verbal and not achieving the normal milestones. In 2014 after many misdiagnoses and poor communication between treating teams, Romesh and Subani received the news that Arali has a rare genetic disorder caused by a mutation on the SYNGAP 1 gene.

Syngap1 Syndrome is a rare genetic disorder caused by a mutation on the SYNGAP 1 gene that leads to several neurological issues in Syngap patients. It is not inherited and not related to environmental factors. It is also called the “bad luck” mutation - there is nothing that the parents did or did not do to cause the mutation. There are no diagnostic tests that exist to detect this mutation before a baby is born.

SYNGAP 1 is considered a spectrum disorder and not all patients are affected the same way or with the same severity. However, in the case of Arali - she appears to present with all the symptoms associated with this mutation.

(https://www.syngapaustralia.org/what-is-syngap)

Arali requires 24-hour care. Presently, Arali’s parents are her full-time carers. Arali attends the Currumbin Special School 5 days a week, and at the end of 2021, she completed school. At this stage, The Currumbin Special School has kindly agreed to let Arali stay at the school until she turns 18 years of age.

We all know that the transition from school is a crucial time in any young adult’s life and a challenging period. Particularly for Arali, schooling gave her a purpose each day. Without access to programs and activities designed to suit Arali’s needs, she will lose the excitement and opportunity for socialisation her school provided.

Arali’s parents are appealing to your generosity to continue to give Arali an opportunity to socialise outside of her home environment and participate in programmes organised specifically for young adults with disabilities.

There are organisations such as the Cerebral Palsy League (CPL) that deliver suitable programmes for young adults with disabilities and are willing to accept Arali into their group. If Arali can participate in programmes such as making music, movies, swimming, Speech, and Occupational therapies with other young adults with disabilities she can feel included in society and live her life with dignity and freedom.

However, because Arali and her parents are citizens of New Zealand, they are not eligible for any NDIS funding. To give an idea of what costs are involved in these programmes, carers cost between $35 - $60 per hour. Therefore, the cost of Arali’s care has to be funded entirely by her parents. For Romesh and Subani, being full time carers as well as working in the family business they are unable to meet these additional costs. If Romesh and Subani had been provided with an accurate diagnosis about Arali’s condition early on, they would have known that Arali will require lifelong full-time care and would have re-considered their decision to move to Australia, due to the lack of financial support available to New Zealand citizens.

After years of trying to navigate the support systems here in Australia, it is as a last resort that Arali’s parents are appealing for public support. Your generosity is Arali’s only hope of being included in society. They are most grateful and deeply touched by any form of support that will be extended to give Arali an equal opportunity to receive the services other young people are entitled to because of their eligibility criteria.

A special Disability Trust has been set up to receive any donations. Any donation no matter how small would make a big difference to her life.