Alana is known for her engaging smile, her sparkly eyes and her sociable personality befriending everyone she meets. But Alana is not a typical 5-year-old, unable to walk, talk, eat, has lost her hearing and is fully dependent on others for her care.
Losing two young children to a mystery disease that has no cure is Temira Hetherington and Tai Mataroa's reality.
In 2009, the couple's daughter Rio died at just 22 months. In 2014, son Taison died at age three.
Both children are suspected to have died from a mitochondrial disease - their symptoms and the results of muscle biopsies revealed problems with the mitochondria.