The mother of Bianca Scott – the Australian teenager diagnosed with a rare, life-threatening disease – has thanked “the beautiful souls from Malta” for the support shown towards her daughter from across the globe.
“Your community spirit is truly inspiring. I never knew the Maltese people had such big hearts.
“Thank you. We may have distance between us but you are right here in our hearts,” Tammy Hamawi wrote on the Facebook page Bianca’s Battle.
Bianca was first diagnosed with atypical haemolytic uraemic syndrome (aHUS) as a seven-month-old in New Zealand but recovered.
However, last month, one week after her high school social, she fell ill as the condition resurfaced with a vengeance.
The condition results in damage to small blood vessels in the kidney and other organs caused by a genetic abnormality affecting immune system proteins.
She is receiving treatment, known as plasma exchange, that removes and replaces the defective proteins.
The aspiring fashion designer – who dreamed of opening labels in Australia and Europe, including Malta – now has to spend nine hours a day on dialysis.
She cannot afford to pay €360,000 a year for a drug, Soliris, that treats the destructive condition.
The frustrating part is the fact that the treatment she is being given is just as expensive – but is yielding no results.
Soliris has been effective in allowing patients with similar conditions to come off dialysis.
Some Australians received it through a compassionate access programme run by drug firm Alexion Pharmaceuticals but it is not taking new patients.
A new application for Soliris to be subsidised through Australia’s Life Saving Drugs Programme – which funds expensive drugs for people with extremely rare illnesses – is before the country’s Pharmaceutical Benefits Advisory Committee, which is expected to make a decision in March.
Bianca’s family and friends are raising awareness and circulating a petition to lobby the government to fund this drug as part of the programme as soon as possible.
Her godmother, Lisa Sullivan, who has been living in Malta for the past decade, is calling for the support of the Maltese people to help Bianca gain access to this medicine by signing a petition asking the Australian government to intervene.
The petition can be accessed online via the Facebook page Bianca’s Battle (www.facebook.com/Biancasbattle) or through the website http://biancasbattle.com .