Fewer than 500 people in the world are known to have a rare genetic disorder with which John Anastasiadis’ daughter Kyki was born nine years ago.
The disease, beta-propeller protein-associated neurodegeneration (BPAN), causes children to have developmental delays, little to no speech, seizures, sleep disorders and make slow cognitive gains. Most children with the condition have unsteady, staggering movements and many cannot walk.
BPAN is so rare that pharmaceutical companies don’t invest in treatments and government provide little to no funding.
These circumstances led Anastasiadis and his wife to take matters into their own hands — literally — by creating something which could not only raise lacking funds but also promote empathy and compassion for children with rare diseases.
The result is “Rare Adventures,” a coloring book which depicts the children as superheroes while highlighting their thoughts, hopes and power in a novel way.
“Nothing like this book exists on the market,” Anastasiadis told The Pappas Post. “It even gives children the chance to draw themselves as superheroes.”
Anastasiadis’ book is available for purchase online and all proceeds support BPAN research. The website also gives visitors the option to donate additional funds.
A group of doctors and scientists worldwide are working towards treatments for BPAN and there is hope that progress can be made during Kyki’s lifetime.
“We want the world to know that children and adults with special needs also dream, smile, laugh and want to be included,” Anastasiadis said. “We want to teach ‘normal’ children empathy and compassion for children with rare diseases.”
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