Steve with his little carer, Sam. PA hospital 2013
Hi! I'm Amanda. Mother of six, partner and best friend to Steve and this is our story.
After 6 hectic, confused, laughter-filled, chaotic years with two sets of twins that are 17 months apart, now 6 and 7, along with a now 14 and 10 year old, Steve and I were looking forward to life settling down a bit and the kids growing up. Things were never great financially but the bills got paid, the kids were fed and life was content enough......until October last year when the universe upended and Steve came down with a spinal virus out of nowhere. Within 10 days he was hospitalized and operated on due to an epidural abcess that had compressed his spinal cord leaving him 47 years old, a paraplegic from the ribs down, confined to a wheelchair and having to start life all over again.
After nearly 5 months in the PA hospital Brisbane, Steve is home now and although we knew it would be hard and for the most part still have our sense of humour, life as we knew it has changed dramatically and it's taking a toll on all of us, the kids feeling it the most. Steve has his good days and his bad days but always focuses on looking forward and working towards our future, although I know he gets down about not being able to play with the kids or go fishing.....
We have gone through the hospital and spinal outreach programs and used every resource there is and while the people in various departments are wonderful, empathetic people, the services are few and ruled by paperwork and lack of funding. And now I'm his carer. Yikes!
Steve has partial use of his lower body. He can stand with the aid of parallel bars and 'walk' 2-3 laps up and back on a good day. He has no balance, can't close his eyes and tell where his feet/legs are, sporadic movement of the legs, nerve damage, painful muscle spasms that rack his whole body, no control of bladder or bowel and developed a blood clot in his left leg over Xmas that runs from hip to ankle. The medications are many including vitamins and minerals to replenish the body and flush toxins from the drugs and add up costwise. He has been allocated physio once a week with CBRT and has had the transitional team once a week but only for the first 6 weeks out of hospital. Then it's up to us to raise the money for rehab. The frustrating part is no one actually knows how well Steve will get so consistent therapy is imperative to him being able to walk again if that's a possibility. This money will go towards further rehabilitation and medicines.
Part of rehabilitation is getting your independence back. Thanks to a mind-blowing donation of a car that fits the qualifications for modifications to a Hand Control system. Any money will now go towards these changes and a wheelchair lift for the roof.
We have been told there may be a house for us through social housing. A big, 5 bedroom, handicap equipped house. This is fantastic news but it is nowhere near us and we have to come up with moving expenses on our own. As talented as I am, even I can't drive a truck and van at the same time so removalists are top of the list. This money will go towards a new home and new start for my gorgeous kids and ourselves, whenever that may be.
Asking for and needing help is hard lol.... We are strong people who have always been able to muddle through bad times and make life work. Borrowing a bit of cash is a lot different to asking people to give from their hearts and wallets so we can rebuild our new life but here I am, swallowing stupid pride, realising we need help as the stress is beating us and asking for financial support.
Since beginning this page, the kids have been so much happier, excited about a new start, full of ideas and starting to laugh together more. They've gone through so much and it's absolutely priceless to see them so full of life again â¤ï¸
Thank you in advance for caring about our little family. Every little bit helps. Please share our story around.
Yours in gratitude
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