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Coronavirus hits fundraiser to develop treatment for Surrey 8-year-old's rare genetic disorder

2 minute read
Coronavirus hits fundraiser to develop treatment for Surrey 8-year-old's rare genetic disorder

Published by the Eagle Radio News Team at 6:00am 1st April 2020. (Updated at 12:58pm 1st April 2020)

A Surrey dad is continuing to fight to fund a treatment for his 8-year-old daughter's rare genetic condition, despite the challenges posed by the coronavirus outbreak.

Hasti has Cornelia de Lange Syndrome - which currently has no cure or treatments - and without help could lead to several health complications.

Dad Chris says they are just over a quarter of the way to their £400,000 target:

"As social distancing came into affect and people obviously couldn't get out, we've had to cancel loads and loads of events.

"I think we maybe saw ten or twenty thousand pounds worth of potential income just evaporate overnight.

"We're slowly adjusting to the new normal, but the truth is that fundraising really ground to a halt as people get used to staying safe and staying home."

Hasti
Hasti with her mum, dad and brothers.

CDLS is characterised by a whole list of problems including cardiac, auditory, cognitive disability, intellectual disability, speech, language, mutism and seizures.

Chris added:

"If we can't raise this money then we can't develop a gene therapy for Hasti and other kids with CDLS.

"For Hasti that means that things will get dramatically worse.

"She's our little girl, she's a bright and bubbly little creature and we want that to continue.

Find out more about Hasti's story and the fundraiser into finding treatment for her condition