03/12/2025
Meet 15-year-old Tahliyah. She loves to listen to music and spend time with her dog, a miniature schnauzer called Emmi. Today we are sharing her story to celebrate International Day of People with Disability (IDPwD).
Tahliyah has ECHS1 (a rare genetic mitochondrial disorder), spasticity, scoliosis, and global developmental delay, is nonverbal and a full-time wheelchair user.
But Tahliyah hasnโt let her medical conditions and disabilities stop her from chasing her dreams, including co-authoring a book.
Over Tahliyahโs life, sheโs been supported by various teams across the Womenโs and Childrenโs Health Network (WCHN), including Dr Drago from the Metabolic Clinic, Dr Smith from Neurology, and teams from Respiratory, Paediatric Rehabilitation, Ophthalmology, 3D Health, as well as many others.
Jacqui, Tahliyahโs mum shares, โThereโs so much I could say about Tahliyah, we are super proud of her. She has an amazing team around her, all encouraging her to be the best she can be.โ
โTahliyahโs health journey has been a bumpy road. We spent many years in the unknown world without a diagnosis, but even with diagnosis, it still hasn't offered any real help with what to expect.โ
โWe make sure we follow all physio and occupational therapy (OT) programs and doctor advice to keep her well. We have an amazing team around Tahliyah who work together to help us make sure she is well supported.โ
โItโs a full time job when you have a child with a disability. We as a family always try to make everything as inclusive as possible so Tahliyah and her friends get to experience as much as their peers.โ
Over the last year, Tahliyah has worked with her speech therapist to use her Augmentative and Alternative Communication (ACC) devices to co-author her book โThe Monster & The Vetโ.
โShe used her AAC to design the characters and to describe what they do. The speech therapist put Tahliyahs words into sentences to bring the story to life,โ says Jacqui
A big thank you to Jacqui and Tahliyah for sharing your story and showing whatโs possible despite challenges. ๐