Yara's Journey

Dear Friends and Supporters, We come to you with a heavy heart to share the story of Yara, a 14-month-old baby girl who has been fighting for her life since birth. Yara has been diagnosed with epileptic encephalopathy, an extremely rare and severe form of epilepsy that causes developmental delays and frequent seizures. She is one of only 75 known cases worldwide, as her condition is caused by the rare disorder Grin 1. Yara has spent more than half of her young life in hospitals, undergoing countless tests, treatments, and surgeries to manage her seizures and symptoms. Her family has been fighting tirelessly to provide the best possible care for her, but the financial burden of long hospital stays has taken a toll on them. They are struggling to provide for her care while still maintaining their farm, family life and jobs as Yara is in a hospital 500km from where they live. Yara has just returned home from the hospital for a few weeks before her next round of tests and another surgery at the end of May. She requires 24/7 care and monitoring, and her mother cannot return to work as there is no support from NDIS or caregivers at this time. Due to the farm's nature, the family is not eligible for any Centrelink or financial assistance and due to the rareness of the disease, there are no fundraisers or charities that support kids like Yara. Currently, there is no cure for Yara's condition. Her severe seizures put her at high risk of sudden death, and every virus she acquires has a detrimental impact on her already declining health. Yara's life expectancy is short, and she is currently under palliative care. Her family aims to provide her with the best quality of life possible, spending time with her and her three siblings, and making memories while she is still well enough to do so. They hope that if they can keep Yara safe for as long as possible, research may catch up, and a cure may be found. Yara’s family find it difficult to ask for help and I know lots of people have offered. This is why I have set up this page for them and we are reaching out to our community to ask for your support in helping Yara and her family during this difficult time. Our goal is to raise funds to cover ongoing treatments, travel, supportive aids and other related expenses. Any amount, no matter how small, will make a significant difference in Yara's life and her family's well-being. We believe in the power of community and the generosity of people. We hope that you will join us in supporting Yara and her family as they navigate this challenging journey. Together, we can make a difference in the life of this brave little girl. Thank you for your support and kindness.