This story is made possible by:
The origin of the Pediatric Rare Disease Collection
It comes as no surprise that wishes have the power to change a child’s life, but what surprised me is how it changed mine. Being witness to the granting of Aubriella’s wish left an indelible impression on me. She showed me how powerful it is for many of these families who are going through unfathomably difficult circumstances to be given an opportunity to be fully present for the joy of spending time together as a family. Aubriella inspired me to create a collection specifically for pediatric rare disease.
The second film for the Pediatric Rare Disease collection was made possible by the Sony Alpha Female+ grant, an honor given to only 24 women who create extraordinary art that challenges tradition, fight for important causes, and hold the torch of creativity to light the way for those coming behind them. For this project I connected with Make-A-Wish® MA & RI to find a viewpoint of wish granting for a rare disease family that was a little bit different. Together we developed the concept for a film that depicted how a wish is more than what it may seem on the surface.
“Rare Disease” isn’t so rare after all
Often times the term rare disease conjures up the idea that it’s far removed from most people’s lives when in reality rare diagnoses collectively affect many people. *One recent study estimated that rare diseases affect between 6% and 8% of the global population. When I set out to find a family for the Sony Alpha Female+ Grant project I didn’t have to look far. In the town next to mine is a family with a little fighter named Conor who battled brain tumors. You’ll have to watch the film to hear his story but you want to know something really crazy? I didn’t realize it until I showed up at the family’s doorstep that I went to high school with Conor’s dad. So again, rare disease isn’t so rare after all.
*Wakap SN, Lambert DM, Alry A, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database [published online September 16, 2019]. Eur J Hum Genet. doi: 10.1038/s41431-019-0508-0.
