This year, I am riding in the relay team "Stranger than fiction"in the Indian Pacific Wheel Race, otherwise known as the Indipac.
My leg is from Perth to Adelaide, a mer 2500+ kms.
I want to dedicate my ride to this little trooper, Paige. Her mum Kate is one of my best friends and I have watched with admiration and horror as they struggle through their daily lives with a severely disabled daughter. Their finances are, to put it mildly, pretty shit.
Simple things like a proper wheel chair, the ability to pay a nurse so that both parents can have a few hours respite. Paige doesn't sleep very well and trips to the main Adelaide hospital are a 3.5 hour round trip, she won't settle in the car, needs constant attention and holding. She can't eat and is fed by a tube at all times, she has botox to stop muscle spasms, the list just goes on.
I got knocked off my bike two years ago and suffered a spectacular fall before that and one thing I've learnt from this accident of mine, is that your health is the most important thing. I don't have proper balance anymore due to vertigo, I fall over quite a lot. I've got some fun nerve damge but really, what honestly do I have to complain about. So I'm hopefully riding with IPWR's permission and support to get some funds raised so these guys can get some shit done.
I'm sure that Kate and Ian have a lot of friends who would love to support them, but haven't previously had an outlet to do so. It's not a situation where you feel comfortable giving them money and they wouldn't take it and baby sitting isn't on the cards, let me tell you! But a group effort from everyone, they are really happy and supportive of this and feel good about the go fund me option.
So please support me as I trundle my way across the Nullaboor in the heat and with my friends the flies. This is a completely unsupported ride, although you can track mine and the other racers "dots" ( I will provide the link soon)
Please also follow milchcafebar on instagram and facebook.
It's literally just me and my bike, tent attached and some water bottles and a lot of sunscreen.
Here is a little information about Paige that her dad Ian has kindly written for me :-)
Paige was born at 38 weeks gestation by “non-emergency emergency” caesarean after a brain abnormality and issues with her weight were discovered during routine antenatal scans. At just a few days old it was discovered that she suffers from a brain abnormaility called Bilateral Frontoparietal Polymicrogyria (PMG). Subsequent genetic testing identified the cause as a major deletion on one of her chromosome sevens, something doctors put down to plain old bad luck with either a dodgy sperm or dodgy egg the culprit. Doctors have told us that the fact the Paige went to term is a miracle and is a sign of the little trooper she is. After the PMG diagnosis we were told that Paige’s disabilities would be at least moderate but more likely severe, something that has proved true. This was tough to take as new parents of a newborn baby. The list of possible disabilities and diseases associated with her PMG and chromosomal deletion is extremely long and tough reading.
Now aged four, Paige suffers from or has been diagnosed with an intellectual disability, Cerebral Palsy, Epilepsy, global development delays, and associated issues. Consequently she regularly sees doctors/specialists/therapists including neurologist, gastroenterologist, general surgeon, plastic surgeon, audiologist, opthamologist, physiotherapist, occupational therapist and speech pathologist. Paige is severely limited with what she can do. Some examples are she is unable to hold her head up, sit, roll, stand, crawl, walk, talk, eat, drink, pickup/hold a toy or do anything for herself. Despite this she is very much aware of people and her surroundings and enjoys spending time with others. The best way to describe her situation is trapped in her own body. She is totally reliant on others and gets upset when left alone. She does however have a heart-warming smile and can giggle like nothing else. Resilient should be her middle name as she takes everything in her stride. Even when struggling with illness she still manages to smile.
Unfortunately we’re still waiting for a wheel chair from the NDIS so we’re forced to carry her most of the time. This is taking its toll on us physically as she continues to grow bigger and bigger. What the future holds for Paige, we don’t know. She’s starting kindy this year and school next year but beyond that we don’t know what the future holds. How long is a piece of string? What we do know is that it will be hard. Nothing is easy for Paige with your average day involving therapy, regular trips to the doctor/hospital, multiple doses of medication and of course playing with parents and in particular little sister Maddie. With Paige’s limitations we find it very difficult to do almost anything “normal” such as going for family outings, particular when the weather isn’t great. If we had more support such as equipment or a carer it would allow us to live a more normal life and give both our girls the life they deserve.
Thank you for your support, Kate Ian, Paige and Maddie
- Sarah & Richard Lindner Crowe
- Kim Chapman
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