Helping families facing
pediatric rare disease
by providing a space to share their stories.
Helping families facing
pediatric rare disease
by providing a space to share their stories.
Photos, short films, documentaries & podcasts
Storytelling to make a difference
Photos, short films, documentaries & podcasts
We believe that sharing families’ stories can help those within this community to not feel alone in their journey. Even for those who have never been through something like this, we can all relate to the common human experience of childhood. Through that shared space we hope we can inspire others to support the Rare Disease Community in times of need and stand with them to fight for the causes that are most important to helping these children and families have access to the care they need and deserve.
Helping families facing pediatric
rare disease
by providing a space
to share their stories.
We believe that sharing families’ stories can help those within this community to not feel alone in their journey. Even for those who have never been through something like this, we can all relate to the common human experience of childhood. Through that shared space we hope we can inspire others to support the Rare Disease Community in times of need and stand with them to fight for the causes that are most important to helping these children and families have access to the care they need and deserve.
Authentic Advocacy
Delayed or misdiagnosis, lack of information and research, limited treatment options, inequities in healthcare, immense financial burden – this list goes on. The lack of support for the rare disease community puts a large burden on families who are already dealing with so much. Individually, some diagnoses are represented by just a handful of people, but collectively rare disease makes up a group of about 30 million Americans.
How can we possibly tackle such massive problems?
Though the voices of children.
Rare disease doesn’t just affect kids, but I believe their stories are often an important missing piece. If there is one thing we can all relate to it’s childhood, and in the space they create for us to see joy so visibly present even amidst the challenges they face everyday, I hope we all may be more willing to acknowledge that change needs to happen so these children and families can have access to the care they need and stand beside them in the fight for what they deserve.
Authentic Advocacy
Delayed or misdiagnosis, lack of information and research, limited treatment options, inequities in healthcare, immense financial burden – this list goes on. The lack of support for the rare disease community puts a large burden on families who are already dealing with so much. Individually, some diagnoses are represented by just a handful of people, but collectively rare disease makes up a group of about 30 million Americans.
How can we possibly tackle such massive problems?
Through the voices of children.
Rare disease doesn’t just affect kids, but I believe their stories are often an important missing piece. If there is one thing we can all relate to it’s childhood, and in the space they create for us to see joy so visibly present even amidst the challenges they face everyday, I hope we all may be more willing to acknowledge that change needs to happen so these children and families can have access to the care they need and stand beside them in the fight for what they deserve.
Just The First Step
Short Film
COVID made many things go virtual and physical therapy was no exception. After Conor’s wish was granted through Make-A-Wish Massachusetts & Rhode Island, his parents were able to use the playground he received as an essential tool for helping him through therapy and build his confidence to climb, run, jump and play!
#Aubsessed
Short Films & Photos
This event looked like a wedding any girl would dream of but everything about this moment was not conventional. Aubriella was battling the same mitochondrial disease that took her brother Bryce just two years earlier. Our community came together to throw her and her family a celebration of love for everyone in her life to rally around.
From The Heart
Documentary anticipated 2024
Sammy and his family went to Give Kids The World Village in Kissimmee, Florida. It’s not an unusual occurrence for families to travel to Disney, but this was an extraordinary moment for them. At one year post heart transplant, this was the first time they could travel more than 3 hours from home where they could really focus on enjoying time together as a family.
Running With Victory
Documentary anticipated 2024
Because Victory had a prenatal diagnosis of Trisomy 13, Brian and Corrine were encouraged to terminate the pregnancy and then told they would only be offered comfort care after birth. After a long fight to get her care, she was able to be transferred to Boston Children’s Hospital. She is now a spunky, happy, vibrant 4 year old.
Just The First Step
Short Film
COVID made many things go virtual and physical therapy was no exception. After Conor’s wish was granted through Make-A-Wish Massachusetts & Rhode Island, his parents were able to use the playground he received as an essential tool for helping him through therapy and build his confidence to climb, run, jump and play!
#Aubsessed
Short Films & Photos
This event looked like a wedding any girl would dream of but everything about this moment was not conventional. Aubriella was battling the same mitochondrial disease that took her brother Bryce just two years earlier. Our community came together to throw her and her family a celebration of love for everyone in her life to rally around.
From The Heart
Documentary anticipated 2024
Sammy and his family went to Give Kids The World Village in Kissimmee, Florida. It’s not an unusual occurrence for families to travel to Disney, but this was an extraordinary moment for them. At one year post heart transplant, this was the first time they could travel more than 3 hours from home where they could really focus on enjoying time together as a family.
Running With Victory
Documentary anticipated 2024
Because Victory had a prenatal diagnosis of Trisomy 13, Brian and Corrine were encouraged to terminate the pregnancy and then told they would only be offered comfort care after birth. After a long fight to get her care, she was able to be transferred to Boston Children’s Hospital. She is now a spunky, happy, vibrant 4 year old.
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.