Although Beau’s future is filled with many unknowns, Nicole is determined to provide her little boy with the best quality of life possible

Twenty-month-old Louis's parents, Amy and James, have one goal for their little boy – for him to live the “biggest and best life” possible.

Kira, was diagnosed with KCNQ2 Encephalopathy, a rare form of epilepsy that typically presents in the first week of life. She is one of less than 1000 children who have the condition worldwide.

"Our son, Sol, was four weeks old when his care was transferred to Bear Cottage, the children's hospice for NSW. It was scary and felt bittersweet, but this quickly turned into a heart-warming and cherished experience.