FoxG1 on Daily Telegraph

With the Singha Family’s efforts at raising awareness of FoxG1 (Brain Factor1) syndrome and the efforts to find a cure, the news was picked up by Daily telegraph. At this time there were less than 175 families that had children diagnosed with FoxG1.

It was a big surprise to Vivek and Monika that there was no child in Sydney at all diagnosed with FoxG1 as yet. Unintentionally Kushagra became the first child in Sydney and the first child in India to be diagnosed with FoxG1 (Brain Factor1) Syndrome.

Check out the Hyperlink below to see the news story on Daily telegraphs website.

https://www.dailytelegraph.com.au/newslocal/glenwood-singha-family-hope-to-raise-awareness-and-funds-for-foxg1-syndrome-cure-for-son-kush/news-story/1fed07d2988cb29dac9d05e7c8588c84

Glenwood Singha family hope to raise awareness and funds for FoxG1 syndrome cure for son Kush

 

Kushagra “Kush” Singha has been an unintentional trailblazer for the FoxG1 syndrome community in Sydney.

The Glenwood two-year-old was diagnosed with the rare genetic condition in March 2015 after 18 months and more than 75 medical tests.

His father, Vivek Singha, said Kush was found to have the c. 946 del mutation that had not been reported in any medical database or literature. The disease impairs brain development, movement and speech.

 

Kush, with his parents, was finally diagnosed with FoxG1 syndrome after 18 months of medical testing.
Kush, with his parents, was finally diagnosed with FoxG1 syndrome after 18 months of medical testing.

“At first, it was very isolating for my wife and I because we had no one to speak with who could understand the situation,” Mr Singha said.

But he and wife Monika Manhas are committed to finding a cure for their son; starting up the International FoxG1 Australia Foundation to raise awareness and funds for medical ­research.

 

“We know that Kush is special so we think we have this diagnosis so he can help people,” Mr Singha said.

 

Kush was the first child to be diagnosed with FoxG1 in Sydney.
Kush was the first child to be diagnosed with FoxG1 in Sydney.

“We’re aware that we have a huge task ahead of us for a cure but there’s been huge advancements in medicine and technology so we’re determined.

“We’re not just asking for money but support because we don’t want parents or children to go through what we’ve gone through with Kush.”

Kush is very much loved by his siblings. From left: Harshi, Jayan, Kush and Pranav.
Kush is very much loved by his siblings. From left: Harshi, Jayan, Kush and Pranav.

Mr Singha said they had come in contact with at least four other children diagnosed with FoxG1 syndrome in Australia.

 

“The support has been amazing for us,” Mrs Manhas said. “Kush is a happy boy, who laughs a lot so he’s not always crying or suffering. He’s got great support from family, friends and people in the community.”

Mum Monika said Kush is a very happy boy who loves to laugh.
Mum Monika said Kush is a very happy boy who loves to laugh.

THE FACTS

● FoxG1 syndrome is a rare genetic mutation of the FoxG1 gene

● It impairs brain development, movement and speech

● Only 175 people in the world have been diagnosed with the condition

● Visit foxg1.org.au to donate or for more information