Fundraiser for Halls Head boy (14) with rare condition to go to Victoria

KYLES Hewitt has set up a Gofundme page for a Halls Head family to go to Victoria.

Ben Lindsay (14) was diagnosed with Friedreich Ataxia (FA) in October 2016 at the age of 12.

“Its been a hell of a ride since his diagnosis, not just for young Ben – but for the whole family,” Mrs Hewitt said.

FA is a rare and debilitating disorder. It affects young adults mobility and movement. It is a degenerative neuromuscular disorder that is life shortening. Ben has developed complications such as scoliosis or heart disease. B

There is no cure or effective treatment.

Ben uses a wheelchair sometimes and attends school part time. When walking he falls frequently. He often drops things he is carrying or bumps into walls.

“Unfortunately, his progression is quite rapid,” Mrs Hewitt said.

“He will be confined to a wheelchair in the near future.”

Prior to diagnosis, Ben was an avid sportsman. His dreams were to race V8 supercars and to play cricket for Australia.

A mechanic at Porsche Racing Australia, who has FA, heard about Ben and invited his family to visit Phillip Island this week.

“Ben can spend some time checking out Porsche Racing Australia and feeling the thrill of tearing up that track,” Mrs Hewitt said.

She started a Gofundme page to raise money for Ben, his mother Kellie and brother Jak to visit Victoria.

“This might just be the opportunity of a lifetime for Ben and he deserves to hold onto his dreams,” Mrs Hewitt said.

“Any money raised in excess of what is needed for accommodation and flights, will be donated to Friedrich Ataxia Research Association.”

To donate visit Gofundme for Ben.