Rare diseases are something of a paradox. They are defined by having fewer than 200,000 people suffer from it in the U.S. This means that in a room of 100,000 people, a maximum of 60 people would suffer from the disease. Bear in mind, that this is the threshold for it being considered a rare disease – many specific diseases are even rarer than this.
The chances of a person suffering from any single rare disease is, by definition, highly unlikely. But this is where the paradox comes in. There are, according to one source, over 7,000 types of rare disease that exist. Other sources place it at 10,000. So, while the chances of suffering from any one rare disease is low, there are thousands of families suffering from some rare disease at any moment in time.
To make matters worse, 70% of rare diseases present in childhood and, perhaps due to their rarity, 95% don’t have approved treatment options. Most tragically of all, 30% of children with a rare disease die before they are five years old.
Grief to kindness: Taking ownership of the paradox
This was the situation that Cathy McCann and her husband found themselves in. Cathy is the mother of Sadie McCann, a child who passed away at only three-and-a-half years old from a rare disease called Aicardi Syndrome. This devastating illness affects about one in 105,000 to 167,000 newborns in the United States, almost exclusively females.
For Cathy and her husband, Adin, this was understandably a cruel loss that was difficult to deal with. How can anything good come out of something so tragic? In many ways, this feels like another paradox.
And yet this is exactly what the McCanns decided to do. They took ownership of the situation to turn a tragedy into a positive influence on others.
The beginning of Kindness Acts
Cathy, her family, friends, and others decided to create an “Acts of Kindness Challenge” to honor Sadie’s life. They began in 2014, the year after Sadie passed, by having teams of friends across the country who were provided a list of kind acts.
“The Acts of Kindness list included acts such as donating items to a local food pantry, dropping off items at a dog rescue, bringing flowers to a nursing home, picking up litter, and paying for the person's coffee behind you in line,” Cathy explained.
Once they completed one of the challenges, the team members would hand out a card – which can be seen here – explaining who Sadie was and why the act of kindness was performed.
The power of kindness
When asked why they decided to do it, Cathy said: “Kindness has always been an important quality for us personally, as we were beneficiaries of others' acts of kindness during Sadie's short life. It seemed like the most appropriate way to celebrate her life and spread joy to others.”
The idea was popular, with many people taking part. Cathy estimated that “we had approximately 100 people which included friends, family, neighbors, and even some of Sadie's medical team and therapists.”
After the challenge was completed, there was a sense of joy among the participants. As Cathy put it, “I heard once that if you are in a bad mood, you should do something nice for another individual – it's an immediate mood-booster! I also think the event helped people to realize that they could spread joy to others in their everyday lives.”
(Acts of Kindness Day 2013: left to right- Tracy VanShiock - a school teacher and Sadie's aunt - randomly treated 6 fellow instructors to cookies in Granger, Indiana; musician Nick Morris performed songs at a retirement community in Hollywood, CA, the residents were invited to a birthday party in Sadie's honor and received cake and flowers, not pictured - the VanderWoude family of NYC surprised numerous children with free carousel rides in Central Park. )
The Sadie McCann Fund: Building a culture of kindness
The “Acts of Kindness” was initially a one-off event to celebrate Sadie. But that wasn’t the end of the story.
“The event was held prior to the official establishment of the Sadie McCann Fund,” Cathy said. “But the principles and practices of kindness certainly play a role with the mission of The Sadie McCann Fund.”
The Sadie McCann Fund is a non-profit organization that Cathy and her loved ones set up to help families with children suffering from Aicardi Syndrome. According to the website, the purpose of the Fund is to provide “direct financial assistance to support families and children living with this challenging diagnosis.”
As with many rare conditions, Aicardi Syndrome is difficult for the families to manage. Researchers don’t know the cause of Aicardi Syndrome, although they believe that it is probably the result of a mutation in a gene on the X chromosome as it almost exclusively affects females.
The symptoms are equally challenging, including brain malformations, issues with vision, physical and developmental problems, as well as frequent seizures. The support of this Fund is instrumental to families who find themselves in dire circumstances.
November 13: A worldwide kindness movement
Cathy and her family no longer host the “Acts of Kindness Day,” preferring instead to focus on the Fund and directly support affected families.
But their idea lives on and feeds into a larger movement. November 13 officially recognized as World Kindness Day, spearheaded by a non-profit organization that aligns with what the McCann family were doing in Sadie’s memory – making kindness the norm.
When asked about finding opportunities to practice acts of kindness every day, Cathy said, “You don't necessarily even have to go out of your way! There are so many opportunities that present themselves in the course of everyday life. It could be as simple as offering to take a photo for a group or starting a conversation with someone who looks lonely.”
Grief takes many forms and there are many ways to cope with it. We’ve spoken before about the role that pets can play and the importance of talking about your struggles. But the McCann family decided to take another route – to help create joy from tragedy.
If you are suffering from grief and need help coping, talk to us today or visit mhascreening.org for free mental health tests and resources from Mental Health America.
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