Stories that highlight the challenges and joys of
families facing a pediatric rare disease diagnosis
There is often a lack of awareness and understanding about the challenges and struggles faced by children and families dealing with pediatric rare disease. This can lead to stigmatization, isolation, and limited support. Through sharing these stories we hope to cultivate compassion, kindness and connectedness when you step into a piece of these families’ lives. Sharing these stories can be a way of telling families battling rare disease, “We see you. We see your struggle. We see your pain. And we see the beauty of your life and love.”
Stories that highlight the challenges and joys of
families facing a pediatric rare disease diagnosis
There is often a lack of awareness and understanding about the challenges and struggles faced by children and families dealing with pediatric rare disease. This can lead to stigmatization, isolation, and limited support. Through sharing these stories we hope to cultivate compassion, kindness and connectedness when you step into a piece of these families’ lives. Sharing these stories can be a way of telling families battling rare disease, “We see you. We see your struggle. We see your pain. And we see the beauty of your life and love.”
Collaborators
Collaborators
Currently in Production
Currently in Production
Running With Victory
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
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.
Super Sammy Receives a Heart
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
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.
Inspiration
it all started with one family in need
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
it all started with
one family in need
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.
If you would like to support a family, you can make a tax-deductible donation through our fiscal sponsor, Entertainment 2 Affect Change, through the button below.
If you would like to support a family, you can make a tax-deductible donation through our fiscal sponsor, Entertainment 2 Affect Change, through the button below.
Executive Producers
Patrick James Lynch
Award-Winning Filmmaker, CEO of Believe Limited & Founder of Bloodstream Media
Effie Parks
Rare Disease Mom & Podcast Host,
Once Upon A Gene
Associate Producers
Nick Hudson
Executive Director, Entertainment 2 Affect Change
Tyler Gregory
Wish & Marketing Director, A Special Wish Dayton
Advisors
Kirsten Rutherford
Creative Director for World Wish Day, Executive Creative Director at TBWA\Chiat\Day
Mike McKenzie
CEO of the Dream Factory
Tami O’Brien
37 Years & 1st Employee of Give Kids The World Village
Michael Dunsky
Mortgage Loan Officer, Fairway Mortgage Corporation
Executive Producers
Patrick James Lynch
Award-Winning Filmmaker, CEO of Believe Limited & Founder of Bloodstream Media
Effie Parks
Rare Disease Mom & Podcast Host,
Once Upon A Gene
Associate Producers
Nick Hudson
Executive Director, Entertainment 2 Affect Change
Tyler Gregory
Wish & Marketing Director, A Special Wish Dayton
Halsey Hendrickson
Rare Disease Mom & Photographer, Denali & Co.
Advisors
Kirsten Rutherford
Creative Director for World Wish Day, Executive Creative Director at TBWA\Chiat\Day
Mike McKenzie
CEO of the Dream Factory
Tami O’Brien
37 Years & 1st Employee of Give Kids The World Village
Michael Dunsky
Mortgage Loan Officer, Fairway Mortgage Corporation
Jacose Bell
Sr. Patient Advocacy Lead, Spark Therapeutics, Inc.
Singer/Songwriter
Andrew Marshall
Wish Recipient, Singer & Songwriter, Andrew Marshall Music