Superman Sammy is a fighter

I have heard from numerous families with prenatal rare disease diagnoses who felt as though they were being pressured into strongly considering abortion. This space is NOT to argue pro-life or pro-choice. What is important is to recognize the importance of this family’s decision and that they were encouraged to seek out multiple opinions. As you will see in this sneek peek, when Sammy’s parents first received the diagnosis at their anatomy scan, doctors were concerned that Sammy might not even make it to term and were not familiar with treatments available for his rare genetic heart defect. After an excruciating few days of waiting to see a specialist at Cincinatti Children’s, they learned that many kids with this condition were able to thrive with a series of surgeries. In the full documentary the family will share more about the journey that led to an unexpected heart transplant. Sammy continues to show that he is resilient and lives childhood to the fullest. Unless you saw the scar on his chest, you probably wouldn’t have any idea what he has been through just by looking at him.

Illness affects the whole family

From a young age I learned that a life-changing diagnosis affects the whole family. At the age of twelve my mom was diagnosed with MS and it forever changed my life. Because of this, it was important to me that I include Sammy’s sister Sophia as much as possible. She was a little more shy about talking in front of the camera but you’ll see that as much as possible I captured how she was part of every moment. These are her memories, challenges, and triumphs too. I want her to remember that she’s not going through this alone either. So when you come across a family who is dealing with a difficult diagnosis please remember to support the whole family, not just the person who is affected.

Give Kids The World Village

Did you know that historically one out of every two wishes granted for kids with critical illness is for Disney a wish?* Most of the families who visit Disney World in Florida stay at a magical resort called Give Kids The World Village. With the help of partnering wish-granting organizations like A Special Wish of Southwest Ohio, Give Kids The World Village has welcomed more than 188,000 families from all 50 states and 77 countries.** In Sammy’s sneek peek, you’ll see a room full of stars on the ceilings and walls. Every wish kid who goes there gets to decorate their own star and overnight a magic fairy named Stellar puts their star up in spot that is catalogued so the family can find it when the return for an alumni trip.

If you haven’t experienced kids the world for yourself you might not fully comprehend the magic of these trips, but we hope this gives you a little window into how important wish granting is for families like Sammy’s.

*https://wish.org/disney#:~:text=Since%201980%2C%20Disney%20and%20Make,has%20been%20a%20Disney%20wish.
**https://www.gktw.org/about/

Superman Sammy is a fighter

I have heard from numerous families with prenatal rare disease diagnoses who felt as though they were being pressured into strongly considering abortion. This space is NOT to argue pro-life or pro-choice. What is important is to recognize the importance of this family’s decision and that they were encouraged to seek out multiple opinions. As you will see in this sneek peek, when Sammy’s parents first received the diagnosis at their anatomy scan, doctors were concerned that Sammy might not even make it to term and were not familiar with treatments available for his rare genetic heart defect. After an excruciating few days of waiting to see a specialist at Cincinatti Children’s, they learned that many kids with this condition were able to thrive with a series of surgeries. In the full documentary the family will share more about the journey that led to an unexpected heart transplant. Sammy continues to show that he is resilient and lives childhood to the fullest. Unless you saw the scar on his chest, you probably wouldn’t have any idea what he has been through just by looking at him.

Illness affects the whole family

From a young age I learned that a life-changing diagnosis affects the whole family. At the age of twelve my mom was diagnosed with MS and it forever changed my life. Because of this, it was important to me that I include Sammy’s sister Sophia as much as possible. She was a little more shy about talking in front of the camera but you’ll see that as much as possible I captured how she was part of every moment. These are her memories, challenges, and triumphs too. I want her to remember that she’s not going through this alone either. So when you come across a family who is dealing with a difficult diagnosis please remember to support the whole family, not just the person who is affected.

Give Kids The World Village

Did you know that historically one out of every two wishes granted for kids with critical illness is for Disney a wish?* Most of the families who visit Disney World in Florida stay at a magical resort called Give Kids The World Village. With the help of partnering wish-granting organizations like A Special Wish of Southwest Ohio, Give Kids The World Village has welcomed more than 188,000 families from all 50 states and 77 countries.** In Sammy’s sneek peek, you’ll see a room full of stars on the ceilings and walls. Every wish kid who goes there gets to decorate their own star and overnight a magic fairy named Stellar puts their star up in spot that is catalogued so the family can find it when the return for an alumni trip.

If you haven’t experienced kids the world for yourself you might not fully comprehend the magic of these trips, but we hope this gives you a little window into how important wish granting is for families like Sammy’s.

*https://wish.org/disney#:~:text=Since%201980%2C%20Disney%20and%20Make,has%20been%20a%20Disney%20wish.
**https://www.gktw.org/about/

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.