Kiwi siblings Faith Sinclair and Daniel Peach have been diagnosed with the same rare genetic condition that took their brother's life. Photo / Supplied
Kiwi siblings Faith Sinclair and Daniel Peach have been diagnosed with the same rare genetic condition that took their brother's life. Photo / Supplied
Faith Sinclair and Daniel Peach are fundraising for gene therapy treatment in the US for sialidosis.
The siblings, who began experiencing symptoms at 18, hope the treatment will save their lives.
They have launched a Givealittle page to raise funds for the groundbreaking therapy.
Two Kiwi siblings with the same rare genetic condition that took their brother’s life are fundraising for a groundbreaking gene therapy injection in the US they hope will save their lives.
Faith Sinclair, 32, and her brother Daniel Peach, 43, have sialidosis, an inherited progressive metabolic disordercaused by a faulty gene that prevents cells from breaking down sialic acid-containing molecules, which build up and affect organs and tissues.
“There are only 55 patients in the world that we know of that have sialidosis,” Sinclair told the Herald.
Their older brother Antonn Peach died at 42 from the disease.
“When he was 28 they had told him he only had 10 years to live,” Matamata-based Sinclair said.
Kiwi siblings Faith Sinclair and Daniel Peach have been diagnosed with the same rare genetic condition that took their brother's life. Photo / Supplied
She and Daniel both began experiencing symptoms when they turned 18, but the issues they faced were different.
Daniel first had difficulties with his balance and Antonn experienced seizures.
When Sinclair also began struggling to pick up objects using her hands she didn’t want to tell her family.
At the time Sinclair, who is now an early childhood teacher, was Antonn’s fulltime caregiver.
“It’s a lot, to think that someone would have to look after me the same way I look after him.
“I thought I was going to be the next burden, so I was trying to run away from home.”
Antonn Peach - pictured in a wheelchair with nephew Ben Crosby - died at 42 from sialidosis. Photo / Supplied
When she finally told her family about her symptoms they took her to an optometrist who scanned the back of her eye.
She said they found a “cherry red spot” – a distinctive sign of the disease.
“So that’s how I was diagnosed, I was diagnosed at 18.”
Sialic acids are widely found in animal tissues, so to help slow the disease’s progression the siblings have gone vegan to reduce the amount they are consuming.
“Our progression is not so rapid because we’re not consuming animal products like Antonn did, but we still have daily struggles because of the disorder.”
Sinclair and her brother hope to fundraise enough money so they can receive groundbreaking gene therapy.
She said the new treatment could reverse the disease with a single injection.
