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.
Taking Control
Despite Jonna and Allie’s diagnoses, they haven’t let their conditions stop them from living an active, happy life. In a recent interview, the girls talk about how they’ve adjusted to life with illness.
Jonna has had NG tubes, TPN, and PICC lines to help her cope with gastroparesis as the disease causes the muscles in the stomach to stop working. She is one of only 100 children in the world with a gastro pacemaker. At points in her life she hasn’t even been able to take a sip of water. In addition to these interventions, she’s been traveling to Ohio ever 8 weeks to receive treatment. While a burdensome venture, she describes the treatment as “life-changing.”
Jonna opened up about the fact that it was difficult adjusting to the new attention her NG tube and gastric pacemaker brought her. But she realized that people were probably just curious. She brushed the stares aside and is now thriving in school clubs as well as with her academics.
Likewise, Allie has faced comments about her knee braces she’s had to wear, the crutches she’s had to use, and the weight she gained after taking steroids as a treatment. She rose above these comments too and is now an active participant in her schools track and field team. While sometimes she has to take a day off because of the pain, overall running has helped her physical and mental condition.
These girls are the epitome of strength and perseverance.
The Impact of The Foundation
Allie and Jonna have been able to share some of the things they’ve learned through their diagnosis with other children going through similar experiences. They advocate that they want to be seen for who they are as an individual, instead of just the diagnosis they’ve been given.
The sisters send care packages across the United States in an effort to let children know that they’re not alone in their journey. Additionally, they provide financial assistance for those who need it, as too often, insurance doesn’t cover all of a child’s necessary treatment. They currently provide financial assistance to 35 different families.
The foundation has held countless fundraisers to support their cause such as clothing drives and t-shirt sales. They’ve also held events to promote awareness and activity nights for children with rare diseases in their own community.
The Fighting H.A.R.D. Foundation hopes to only continue to grow so that they can support more patients and families affected by rare diseases and let them know- they’re not 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.