While Behçet’s is rare, the Neuro-Cardio form of the disease is extremelyrare and new treatments are experimental and involve significant trial and error to see what works. Traditional treatment is currently aimed at preventing the recurrence of the disease by providing a prolonged remission. While previous treatments have had some success, allowing mum to live a ‘normal life’ for limited periods of time, unfortunately, all treatments thus far have failed with every relapse.
Our mum is the bravest person we know and has faced every treatment plan prescribed with positivity. Over the past five months, she has faced aggressive weekly chemotherapy infusions and debilitating side-effects (including severe stomach aches, nausea, fatigue and hair loss) with a smile. Despite her unwavering determination to get through the treatment in the hope of remission, two weeks ago she relapsed and was admitted into hospital once again with meningitis.
Our only hope now is a new immunotherapy treatment that is unfortunately not covered by the Australian Pharmaceutical Benefits Scheme for rare and unusual diseases. As such, it is extremely expensive and will cost approximately AU $30,000 per year / ongoing. Research has also delivered us hope, with cases of Neuro-Behçet’s patients worldwide responding well to ongoing treatment and some presenting in remission at two years post intervention.
Mum now faces the fight of her life while we try to fund this new treatment. For those that don’t know her, she has the most infectious personality and lights up every room. She is a real-life Wonder Woman. She is the most caring, giving and amazing mum and we so blessed to have her in our lives.
We have set our goal to fund the first year of treatment. Any help towards the cost of her new treatment would be greatly appreciated.
Thank you for your generosity and prayers,
Emily, Oscar and Charlotte Little.
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