Simra Khan was diagnosed with Joubert syndrome, a rare brain disorder that affects balance and coordination. She also had Leber’s congenital amaurosis, a genetic eye condition resulting in severe vision loss. With the help of supportive parents, she has thrived despite these challenges. Simra is active and enjoys singing, playing the drums, swimming, and horse riding. She uses the latest technology to read and listen, and still uses Braille. She has also faced renal failure, leading to a kidney donation from her father. With advancements in genomic testing, it’s now possible to diagnose genetic conditions earlier in life, providing hope for personalized therapies in the future. Simra’s mother said there was very limited support when her daughter was diagnosed, but services like NDIS now exist to assist individuals with disabilities. Mental health counselor Princess R. Lakshman said that children with developmental disabilities and their parents could face stigma within migrant communities, emphasizing that it’s crucial to promote and normalize services catering to their unique needs. Simra will be a motivational speaker at an event in Sydney. For further information, contact NDIS on 1800 800 110.
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