Together, we would like to build Ziggy a backyard, where he can share special moments with family and friends during his time with us. When they say ‘it takes a village’, ain’t that the truth! Since Ziggy’s diagnosis of Pearson Syndrome, his village and the broader community have reached out to offer their support. While the journey ahead for Ziggy is uncertain, the goal of his parents, Bec and Sa
rsha, is to provide Zigs with a beautiful journey while he is here with us Earthside. Ziggys compromised immune system means the safest place for him is at home. While it was Sarsh and Becs dream to build a beautiful backyard for their growing family, the uncertainty and reality of ongoing medical expenses, procedures and trials (only available overseas) makes renovating the backyard just out of reach. Zig’s family have been overwhelmed with offers of support, for which we are so grateful. As a village, we would like to build a space that Ziggy can enjoy, and share with family and friends. Ziggys Backyard Blitz, is for those who wish to and are in a position to help us make this a reality. Follow this page for updates on the planning, and if you’d like to get involved reach out! Below are some facts about Pearson Syndrome:
*Pearson Syndrome is an extremely rare genetic disease
*Less than 100 diagnosed and reported cases worldwide
*Average life expectancy is circa 5 years old
*There is no cure at this time, clinical trials are currently being undertaken in Boston and Israel
*Pearons is a large scale mitochondrial deletion disorder (SLSMD), resulting in Ziggy being unable to produce the white and red blood cells to support his growth
Learn more here: https://www.childrenshospital.org/conditions/pearson-syndrome
