Help Lyla Thrive: Support for Her Rare Genetic Condition

This is Lyla’s Story

Imagine being diagnosed as one of 550 cases in the world and having a rare and incurable condition.

Little Lyla is one of these rare 550 individuals who could do with your help on her lifelong medical journey.

Since birth Lyla has faced and overcome many obstacles from being a NICU baby to a diagnosis of epilepsy. But even with overcoming all of these obstacles she is facing a life long medical journey that has taken three and a half years to diagnose which only happened thanks to her loving Mum and Dad who persevered even though they way turned away by many doctors.

Finally a diagnosis of Chromosome 8 deletion has been made by a specialist neurologist in Sydney 6 hours away from Lyla's home town of Dubbo. Chromosome 8 impacts speech, intellectual and global development which affect her brains ability to control movement, language and social interactions.

It also leads to a heightened risk of cancer and heart conditions as well as affecting her muscles and joints. As minimal information is known about Lyla's condition she is now faced with ongoing genetic counselling, specialised education, extensive therapy sessions and numerous doctors visits, which in turn is particularly challenging given her doctors are located 6 hours away.

Lyla's Parents have shown incredible strength and love through this journey. If you're able your support would be greatly appreciated in helping them cover ongoing substantial medical costs and ensure Lyla gets the care she needs. Every bit helps and makes a world of a difference for this brave little girl and her family.