Whenever we’re struggling with something, we assume we are alone. We feel like we are the only ones. But in September of 1997, a small group of Friedreich’s ataxia (FA) parents came together via email to share questions, support, and information.
Since then, the online support group, FAPG, has grown to an international group that now includes parents and guardians of children with other childhood-onset ataxias.
Email is a great forum for support and has remedied the isolation and loneliness many feel dealing with the challenges of raising children with these degenerative diseases.
Their website provides another forum to share unique experiences and knowledge of how to cope with ataxia in a family.
What is Friedreich’s ataxia?
Friedreich’s ataxia (FA) is a neuromuscular disease that mainly affects the nervous system and the heart. It is a hereditary disease, caused by a defective gene that can be passed down through a family.
FA affects about one in 50,000 people worldwide, making it the most common in a group of related disorders called hereditary ataxias.
FA’s major neurological symptoms include muscle weakness and a loss of balance and coordination (ataxia).
Young Voices Speaking UP
Young people are often very capable, educated, and opinionated individuals.
Their problems and concerns may not even dawn on the “powers that be” unless they’re pointed out.
To do that, young people and their supporters must take action. They must not just advise the change agents but become them. And that’s exactly the intentions of OUR KIDS SPEAK.
Poems. Journals. Essays. Rants and vents—all young FA voices speaking up and sharing a message, “You’re not alone. You’re not alone in your confusing emotions, dark thoughts, and daily struggles.”
Regardless of what we’re struggling with, regardless of what’s happening in our lives—the best thing we can do for ourselves is to speak up and be honest.
These young FA voices remind us that while their stories may be unique, the themes are not. We are connected. And there is hope.
