THE parents of little Amber Hartland paid tribute to their “beautiful daughter” yesterday after she lost her brave battle against a rare genetic disorder.
Amber died on Sunday night after her condition deteriorated at her family home in Greenmeadow, Cwmbran.
Amber’s parents Lesley and Nick Hartland fought back tears as they gave an emotional tribute to their special little girl.
Mrs Hartland said: “This is a very difficult time for the whole family right now, but we want Amber to be remembered for the amazing girl she was.
“She already was an angel and now she is with the angels.
“Amber touched so many peoples’ lives and I believe she gave a lot of strength to a lot of people.”
Mr Hartland added: “The pain of Amber’s death is unbelievable right now but the pain is worth it to have had the joy of raising such a beautiful girl.
“It was an absolute privilege to have been Amber’s dad and we are all going to miss her very much.”
Six-year-old Amber suffered from Infantile Tay Sachs, a condition which prevents fatty molecules breaking down in her body.
She was not expected to live beyond her third birthday, but a course of experimental medication stabilised her for more than three years.
One of the first Argus stories about Amber in May 2004 told how a massive fundraising effort from people across Gwent allowed Mr and Mrs Hartland to buy the experimental drug Zavesca to treat Amber’s condition.
The course of treatment cost thousands of pounds a week - and within a few months of the Argus revealing Amber’s condition, donors helped fundraise more than £30,000.
One of the many fundraising events for Amber included a group of eight Cwmbran men carrying their wheelchair-bound friend, Andrew Wilkinson, to the top of Mount Snowdon.
The Argus backed a campaign launched in July by Amber's supporters to challenge Cardiff and Vale NHS Trust's decision to ask a court to decide future treatment for the youngster.
Her parents were inundated with support as they tried to fight for Amber to continue to receive medical treatment and let them decide on the treatment she should receive.
Mrs Hartland added: “In the end Amber chose her own way to go no-one was going to decide for her.
“I would like to thank everybody from the bottom of my heart who has supported us over the years with getting the best possible treatment for Amber.”
A total of 80 collection buckets, which were in circulation for the Amber Hartland Appeal, have now been collected.
The money raised from them, which was due to go towards treatment, will now help towards the cost of her funeral.
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