Helping families facing
pediatric rare disease
by providing a space to share their stories.
Photos, Short Films,
Documentaries & Podcasts
Photos, short films, documentaries & podcasts
Storytelling to make a difference
Photos, short films, documentaries & podcasts
We hope that through sharing their stories, this art can be a source of healing for these families – that they feel empowered by seeing their own strength and supported by the tribe around them. These stories can also be used as a powerful tool for advocacy. When we’re able to bring viewers into the perspective of what it is like to live in these families’ shoes in a relatable way, they may care more deeply about the people first and then stand with them to help tackle systemic problems that the pediatric rare disease community face.
Helping families facing pediatric
rare disease
by providing a space
to share their stories.
We hope that through sharing their stories, this art can be a source of healing for these families – that they feel empowered by seeing their own strength and supported by the tribe around them. When we’re able to bring viewers into the perspective of what it is like to live in these families’ shoes in a relatable way, they may care more deeply about the people first and then stand with them to help tackle systemic problems that the pediatric rare disease community face.
Free
FOR FAMILIES
Imperfect JOY® is partnering with Entertainment 2 Affect Change (E2AC) as a fiscal sponsor so charitable donations and grants can help make these stories possible.
Pediatric rare disease often carries with it a significant financial burden. We don’t want these sessions to add to families’ plates. We are working alongside charitable patient groups to help spread awareness of these stories while turning to crowdfunding, grants, and partnerships with for-profit healthcare related organizations to fund this project.
Free
FOR FAMILIES
Imperfect JOY® is partnering with Entertainment 2 Affect Change (E2AC) as a fiscal sponsor so charitable donations and grants can help make these stories possible.
Pediatric rare disease often carries with it a significant financial burden. We don’t want these sessions to add to families’ plates. We are working alongside charitable patient groups to help spread awareness of these stories while turning to crowdfunding, grants, and partnerships with for-profit healthcare related organizations to fund this project.
Currently in Production
Currently in Production
Super Sammy Receives a Heart
Documentary anticipated 2024
This 5-year-old and his family are preparing to go on vacation to Give Kids The World Village in Kissimmee, Florida. It’s not an unusual occurrence for families to travel to the Florida Parks, but for them this is an extraordinary moment. At one year post heart transplant, this will be the first time they will be able to leave more than 3 hours from home. They described this opportunity as “the gateway to the rest of their lives”.
Along with sharing Sammy’s story, his family wants to recognize that another family is mourning the loss of their child one year ago. They want to thank this family for literally giving Sammy life through their son’s organ donation as well as all those who have done the same, and to encourage anyone who might be on the fence about being on the donor list to sign up.
Super Sammy Receives a Heart
Documentary anticipated 2024
This 5-year-old and his family are preparing to go on vacation to Give Kids The World Village in Kissimmee, Florida. It’s not an unusual occurrence for families to travel to the Florida Parks, but for them this is an extraordinary moment. At one year post heart transplant, this will be the first time they will be able to leave more than 3 hours from home. They described this opportunity as “the gateway to the rest of their lives”.
Along with sharing Sammy’s story, his family wants to recognize that another family is mourning the loss of their child one year ago. They want to thank this family for literally giving Sammy life through their son’s organ donation as well as all those who have done the same, and to encourage anyone who might be on the fence about being on the donor list to sign up.
Running With Victory
Documentary anticipated 2024
An inspirational story of a dad who is running for his daughter, Victory, in the Boston Marathon. Because Victory was diagnosed with Trisomy 13, Brian and his wife, Corrine, were encouraged to terminate the pregnancy and then told they would only be offered comfort care after her birth. It wasn’t until they found one doctor who supported their decision to fight for their daughter’s life that they were given orders to have her transferred to Boston Children’s Hospital where she spent 6 months in the NICU. Now she is a spunky, happy, vibrant 4 year old who, despite having a lot of complex medical needs, is most undoubtedly a beautiful life that is worth fighting for. They want to get her story out there to make a change for other families who are struggling with getting support through rare pediatric diseases.
Running With Victory
Documentary anticipated 2024
An inspirational story of a dad who is running for his daughter, Victory, in the Boston Marathon. Because Victory was diagnosed with Trisomy 13, Brian and his wife, Corrine, were encouraged to terminate the pregnancy and then told they would only be offered comfort care after her birth. It wasn’t until they found one doctor who supported their decision to fight for their daughter’s life that they were given orders to have her transferred to Boston Children’s Hospital where she spent 6 months in the NICU. Now she is a spunky, happy, vibrant 4 year old who, despite having a lot of complex medical needs, is most undoubtedly a beautiful life that is worth fighting for. They want to get her story out there to make a change for other families who are struggling with getting support through rare pediatric diseases.
Inspiration
Abriella was battling the same mitochondrial disease that took her brother Bryce just two years earlier. Our community came together to throw her a dream wedding, a celebration of love for everyone in her life to rally around.
Inspiration
Aubriella was battling the same mitochondrial disease that took her brother Bryce just two years earlier. Our community came together to throw her a dream wedding, a celebration of love for everyone in her life to rally around.
About This Collection | Meet The Crew | Audience | Distribution | Events | Timeline | Families | Advocacy Partners | Industry Partners
About This Collection | Meet The Crew | Audience
Distribution | Events | Timeline
Families | Advocacy Partners | Industry Partners