Building Community Among Children with Rare Diseases: The Fighting H.A.R.D. Foundation

The Fighting HARD Foundation

Rare diseases are difficult to face for a myriad of reasons. They can be financially burdensome, physically painful, and emotionally draining. Further, they can make patients and their families feel as if they’re fighting alone because so few others have experienced what they’re facing. Many rare disease patients have never met another person who is going through what they’ve gone through.

The Crocker family has faced these challenges, and they wanted to help ease the journey for other families.

Jonna is a 15 year old sophomore in high school who has an autoimmune deficiency. She also is diagnosed with gastroparesis.

Allie, her older sister, is a junior. She is also diagnosed with an autoimmune deficiency in addition to juvenile rheumatoid arthritis and Crohn’s disease. Additionally, she’s dealt with depression and anxiety as a result of her experiences. She explains how easy it is to feel isolated, and that the mental struggles can be worse than her physical symptoms at times.

Together, these sisters and their parents decided to create the Fighting HARD Foundation to help others to not feel so alone. Rare diseases are lifelong, and so finding joy in everyday life with illness is critical.

Outreach

 The Fighting HARD Foundation is so unique because it is peer-led. The sisters do everything they can to help bring together other people their age fighting similar battles. Some of their outreach includes-

  • Mailing care packages to kids
  • Financially supporting families with medical costs
  • Sending personal, encouraging messages via social media
  • Created a fund at the K. Hovnanian Children’s Hospital specifically to provide patients activities and experiences which will improve their quality of life. This is a 10,000 dollar fund and has helped bring pet therapy, art therapy, and other joys to patients.
  • Leading a “Rare Jeans Day” for “Rare Disease Day”
  • Initiating a clothing drive

The siblings know all of the kids involved with the Foundation by name. They feel connection has to be personal to be meaningful.

Learning You’re not alone

Learning you’re not alone is priceless when you’re living with a rare disease. It is so easy to feel isolated, especially as a child. None of your friends look like you or are dealing with what you’re dealing with.

The Crocker sisters are trying to build a sense of community among children living with rare conditions.   

At a beach party held by Fighting HARD, Jonna, despite some reservations, put on a bikini to show other kids they weren’t the only ones living with a feeding tube.

For Jade Machotka, a 5 year old little girl, this was life changing. She saw that Jonna not only had a feeding tube, she was wearing it proudly. Jade still talks about it, says her mother. She now sees she doesn’t have to be embarrassed.

Jade’s mom was also touched by talking to Tara, Jonna and Allie’s mom. She describes Tara as a rock for other rare disease parents and caregivers.

The Crocker family is showing rare disease families that they can still have beautiful lives and experiences despite their conditions. For example, Allie is running cross country when she couldn’t walk just 3 years ago. Allie and Jonna know they lead by example, and they want to show other patients and families that anything is possible.

You can read more about this extraordinary family here.

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