The Origins of Fighting H.A.R.D.
The Fighting H.A.R.D. Foundation was established in 2015 by two sisters who both live with multiple rare diagnoses. 16-year-old Allie is diagnosed with juvenile rheumatoid arthritis, Crohn’s Disease, fibromyalgia, hydronephrosis, patellofemoral syndrome, and anxiety, just to name a few. Her 15-year-old sister Jonna is diagnosed with gastroparesis as well as SMA Syndrome.
But things weren’t always like this.
Growing up, Jonna was always the healthy child, facing the burden of watching her sister Allie deal with so many medical complications. When Jonna got sick, the roles reversed. Both children experienced how difficult it can be to watch someone you love go through something so difficult.
The family believes that there may be a connection between the children’s diagnoses. If there is an umbrella disease causing both girls ailments, there may be a more universal and beneficial treatment they could receive. But in the meantime, the family continues to “fight HARD for Allie and Jonna every day.”
The family decided to create a foundation after a doctor suggested that Allie find support through a nonprofit. The search began.
The family found organizations which supported their children’s individual diagnoses however they couldn’t find an organization that encompassed all of their rare conditions. So many of the burdens the girls face span all of their diagnoses. They wanted to find an organization that supported every facet of the conditions they dealt with. When they couldn’t find one, they decided to make one themselves.
The goal of the nonprofit is to support, both emotionally and financially, all children living with a rare disease or chronic illness. These individuals may be unique in their diagnosis, but there is much that brings them together. H.A.R.D stands for Having a Rare Disease, and it aims to help all of the patients and their families who fight hard through their diagnosis every day. They want to help children feel less alone.
You can read more about these siblings journeys with rare disease here. You can also check out the Foundation’s Facebook page for more information and details about how to get involved.
