Vivian’s Story

Vivian is a 20-month-old girl suffering with epileptic encephalopathy, a severe brain disorder of early age. The condition manifests with seizures that are multiform and intractable as well as cognitive and neurological deficits. She has frequent apnoeic seizures throughout the day and night, which require immediate lifesaving intervention, and resulting in global developmental delay and a cortical vision impairment. Vivian lives at home with parents Joy and Peyman and her 3-year-old sister Evelyn.

She has had numerous extended admissions to Royal Children’s Hospital in 2015 and is currently an inpatient in ICU due to aspiration pneumonia. When at home, the family are very focused on providing Vivian with the best life possible and work diligently on her development in an attempt to help her reach developmental milestones and improve her quality of life in the future. There are several developmental play items which are recommended for children with cortical vision impairments but given that neither parent is currently able to work due to Vivian and her sister’s care needs, these are additional expenses they are not in a position to purchase themselves.

Previously we had sent out the ‘Wafer 2 Light Box’ which provides illumination to enhance Vivian’s view and Aquarium tickets for 3 visits. This time we delivered the Giant Jelly Fish Aquarium for some extra sensory stimulation, and some toys for Evelyn to provide some fun distraction at home.

Vivian’s family wrote to us:

“Thank you TLC for Kids for providing us with some items for Vivian’s visual therapy.

We were surprised that the package was also filled with goodies for both our girls.

The addition of toys and books really touched us. TLC for kids has been there for us since we left the hospital 1.5yrs ago.

Through TLC for Kids, we feel the support and encouragement from our community. It gives us the motivation to move forward.  We cannot thank you enough.”

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