Gand Syndrome
John in J2 and his family and friends walked 7km earlier this month at Pemulwuy to raise awareness for Gand Syndrome.
John is one of only 400 known cases worldwide of Gand Syndrome. There is no known cure ... yet. The family's efforts raised funds for vital research into this extremely rare neurodevelopmental disorder that has a profound impact on intellectual and physical development.
John's mum Natalie said: "John's medical journey began at birth. By four months old, he had rapid head growth and doctor's suspected hydrocephalus.
"Despite many specialist appointments to find answers, nobody could tell me why my son had severe Global Developmental Delay and severe low muscle tone throughout his body.
"John was finally diagnosed with Gand Syndrome in April 2021 at the age of 4 years. All his symptoms now made sense. The Helping Hands for Gand Association (a US-based, not-for-profit charity) welcomed me with unwavering support and answers to my many questions.
"The purpose of this walk was to raise much needed awareness for Helping Hands for Gand. The funds will go directly to them and be used for much needed awareness and research to find a cure," Natalie said.
You can learn more about Gand Syndrome here www.gatad2b.org
