With her cheery disposition, beautiful smile and heart of gold, it’s hard to believe that she has been fighting a life-threatening illness for so many years. What started at age 16 as slurred speech, difficulty with balance and coordination of her legs and arms has, over the years, slowly claimed her ability to eat, talk, walk and hold objects.
Eleisha has a progressive neurological disease, Olivopontocerebellar Atrophy (OPA) - an uncommon and serious neurological disorder which causes nerve tissue degeneration and atrophy in the brain. In Eleisha’s case it is even rarer because it is combined with Adult On-set Cerebral Palsy which affects numerous parts of her body; only a few people globally suffer from these combined debilitating diseases. Consequently, there are no funds for research nor cure available. OPA has symptoms similar to Parkinson's Disease. Thankfully the diseases haven’t affected her intellect OR taken away her great sense of humour – but it has denied her the simple pleasures that we all take for granted - the taste of chocolate, a cappuccino, walking the dog on a beach, the surf on a hot summer’s day, the remembered aroma and taste of her Mum's crab mornay, (that was her favourite, way back when) or holding a beloved new born nephew!
Eleisha is in a wheelchair, is fed through a percutaneous endoscopic gastrostomy (PEG and tube) and speaks with the help of a Lightwriter (like a talking typewriter) and sign language. She and her devoted carer of 17 years, Karl (who incidentally has major health troubles of his own) face daily struggles to keep her alive - struggles which are at times so heart wrenching that others may simply not have been able to cope. Eleisha has to take numerous pain, anti-cramping and anti-spasm tablets each day and unfortunately often chokes. Karl is close by 24/7 to encourage her NOT TO GIVE UP (and perform the occasional Heimlich manoeuvre if need be!). The progression of her disease is inevitable and she now has 100% failure of her left hand and only 25% mobility in her right hand, so even the small tasks she can perform for herself (like her one-finger typing, so incredibly essential for communication) are gradually failing.
Karl carries Eleisha over many obstacles when ramps aren't available, lifts her up into their vehicle, cleans her feeding tubes, helps her with her personal hygiene and toilet, styles her hair, paints her nails and picks her up when she falls. His dedication and devotion to her is truly inspirational.
Eleisha turned 41 in June this year - outliving what Doctor’s predicted by 25 years. With sheer determination and a positive outlook, she's still going strong. Eleisha loves the quote by one of her heroes, Garth Brooks: "I wouldn't miss this for the world”.
So we think it's about time that these two had something wonderful happen to them – and this is where you come in!
Eleisha dreams of buying a caravan and travelling across the Aussie outback to Uluru!
$30,000 will buy them a caravan (with a built-in wheelchair friendly shower and toilet) and get them ‘on the road’. So far the family have contributed $13,000 – but we need your help to raise a further $17,000. It costs $50 per night to stay at a powered site at the Uluru Caravan Park, so even if you can’t afford to give much, every little bit will help them experience an unforgettable journey.
To achieve this goal will mean the absolute world to Eleisha and Karl. Eleisha loves people, nature and animals and is an avid photographer and poet – so we can only imagine what sort of creativity this once in a lifetime trip will spark inside her beautiful mind.
Let’s make this happen for these two worthy souls!
Thank you very much.
Renee & Family
- Allison Costa
- Maureen Nash
- Louis & Charlie Wheeler
- Raylton Snell
- Alita Walters
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