Amara's story and how you can save a life
Amara desperately needs treatment for late state Neurological Lyme disease. She has been unwell for almost her entire adult life. She was like the rest of us at school, only perhaps a little more vibrant. She was always the first to put up her hand to help, the first to laugh at a joke, the first to embrace a new challenge. Things changed dramatically in her early twenties and she became increasingly fatigued and unwell. Days turned into weeks, weeks into months and months into years of being riddled with a crippling illness that no one could diagnose. First she was diagnosed with Myalgic Encephalomyelitis otherwise known in Australia as CFS (although completely inappropriately titled considering the crippling and life threatening symptoms). The Australian Medical System did not acknowledge that her other illness, late stage Neuroboreliosis (Tertiary Lyme Disease - contracted from ticks carrying the borrelia bacteria) existed until she tested positive to it and many co-infections in early 2013. By then Amara was in the throws of the worst Lyme disease had to offer.
Amara suffers
severe seizures daily. She has extreme chemical sensitivity that
has escalated to anaphalaxys, photophobia, severe cramps and muscle
spasms and she can no longer regulate her body
temperature. All of this leads to her suffering extreme seizures
as well as bronchial spasms that close off her airways leaving
only a tiny space through which the air whistles for her to breathe.
She has been confined to the upstairs level of her parent's rental (darkened by blackout curtains with only the use of dim lamps) for several years due to her severe
chemical allergies. Her joints are constantly dislocated
from the force of her seizures and the mixed messages her brain
sends, causing her muscles and joints to move out of sync. The
pain associated with this and the intensity of her seizures sees her
often paralysed mid sentence. Most recently Amara suffered a
minor stroke due to the warm temperatures that this time of year
brings. This has been a major setback, one that for the first
time I believe Amara doubts she can overcome. The stroke
impacted her language centre and she is now unable to access words
accurately nor understand what is happening (Apahasia). Her
dementia symptoms have increased dramatically and Amara is falling
into paralysis with increasing regularity.
So
we need your support to help Amara get everything she needs today. Her parents
who are both aged care pensioners, are her sole carers and closed
their business to move away from the pollution and free themselves up
to provide care for Amara. The costs of her medication
currently outweighs any benefits they receive from the government and
the bills continue to add up. Amara also desperately needs an
air conditioner amongst other many essential items. Summer is
just around the corner and this means an increased number of seizures
she will suffer daily due to the heat. Amara never fully
recovers from some of her severe seizures and spends days unable to
speak or walk properly.
If
you could make a donation to Amara's cause you would be making an
incredible difference to her life. Every hour of every day is a
struggle for Amara. With your support, we can make those days
seem brighter.
What
We Need
Amara
needs a lot of things, so we're going to just aim high and leave it
up to the universe:
ESSENTIALS - Priority 1
- Consultations with Lyme literate doctors and specialists. Amara is currently WITHOUT any doctor and WITHOUT any treatment other than the former treatment plan she was on, which does not address her progressing and more acutely dangerous symptoms.
-
Medicine.
Amara spends between four hundred often up to seven hundred dollars
every few weeks restocking her essential medications that address
serious deficiencies, malfunctions, malabsorptions and misfiring
systems her body has accrued through long term chronic complex
illness. Amara is currently going without some essential medication due to financial difficulties.
-
A
hyperbaric oxygen tent to sleep in or a chamber. These also need to
be new as Amara's intolerances to chemicals mean she cannot have
contact with or even be in the vicinity of anything that has been
touched by chemicals or inorganic fragrances inadvertently left
lingering by previous occupants.
-
A
new wheelchair that reclines and is collapsible. Currently
Amara uses one that has been donated which is the most basic model. It has
been working for the time being, but it is not comfortable nor safe
for her. Amara has POTS which means she cannot stand upright for long periods of time, the oxygen flow to her brain decreases the longer she's
upright which causes her to frequently fall into paralysis
often in contorted positions, gravely hurting herself and
dislocating joints.
-
Ideally
two permanent reverse cycle air conditioners (it is hoped the owners
would honour the cost of the installation as they would be gaining
these products to their property, otherwise they will also have to pay
for installation) or at the very least one mobile 6kw portable air
conditioner to cool the open spaces of the upstairs rental
(the benefit being should they have to move again she can take it
with her, however they guzzle more electricity and therefore add to
living costs).
-
Two
or three industrial chrome Bunnings fans (simply because they are
the MOST powerful) to help circulate air and also to use in the
event a smell seeps into the house. Amara can redirect the offending
scent away from her to ensure she doesn't have a seizure.
-
Organic meals. Amara can no longer cook. Amara
has lost all sense of timing due to her dementia symptoms and inability to
organise tasks in her head so cooking is no longer an option for Amara. Her
Mum Ros does not have the time or energy to add cooking to her daily tasks. She
is already completely overwhelmed and exhausted with caring for Amara on a
daily basis. To ensure Amara's best
chance at healing and fighting infections, she needs good fuel. They
have been fortunate to find a local company called Wholesomeness, that
do portions of organic pre-prepared gourmet meals (Gluten free, dairy
free, organic and locally sourced). Buying organic food from
Wholesomeness, will allow Amara to eat healthy precooked meals without the need
for preparation.
-
Organic personal products and cleaning products, all purchased on sale in big batches to save money. Many organics are expensive, but through trial and error Amara has found some great brands that are also priced at equivalent rates to their inorganic partners.
-
Grab
rails throughout the property to ensure Amara's safety when she is
trying to navigate around the house. Due to her weakness and
heart issues she needs to have things to hold onto in spaces where the
walker will not fit.
NEEDS
- Priority 2
-
A
new walker, as the old one, kindly donated by a neighbour has some
parts falling off, most dangerously the rubber handles. Amara
utilises this mobility aid to travel to and from bed and runs the
risk of having a serious fall that may cause her to land on the uncovered metal handles.
-
Rugs
or carpet off cuts. These need to be new and off gassed - a
process to allow a new item to emit all toxic smells before being
safe - or ideally rugs made from organic cotton or wool. The wooden floors are not completely
sealed so heat rises making cooling upstairs inefficient. Rugs will also help prevent smoke from seeping through the floorboards from frequent bush fires on Bribie
Island.
-
A
new chaise lounge or lazy boy (reclinable chair) or adjustable
electronic hospital bed to go in Amara's lounge room as she has
currently constructed a day bed out of a second hand chaise,
pillows, memory foam and sheets that tuck it all in. It serves
the purpose but is in constant need of attention and
Amara is incessantly re-tucking the sheets and re-positioning
pillows to make herself more comfortable.
Amara needs to swap
over every single toxic, chemically unsafe product that we use in every day
life. She has been doing it slowly, from manchester and clothing (most
are dyed with formaldehyde that leaks into your washing machine and stays there
tainting anything you wash afterwards), to towels, to cookware, to
storage and every possible item you can imagine that was previously benign has
now become a danger. Anything inorganic or that emits chemicals during
use causes massive allergic reactions in Amara. It's a long and slow
process. Amara waits for sales and tries to stock up on a few things at a
time, but we've got a long way to go.
Carers. As
with all severe illnesses, it doesn’t just affect the person with the
condition. Amara’s illness has also had a
profound impact on her mother and father.
Amara’s parents are elderly and looking after Amara 24/7 is becoming
increasingly more difficult. They have
been unable to leave Amara’s side for the past two years due to her
deteriorating condition. Her parents
need at least one day a week (ideally more) where Amara is supported by a carer
so that they can take time out to relax and unwind.
What our hope is, is that companies
will come on board and offer to donate some of the items Amara needs
or you may have contacts that we could utilize to
buy the items Amara needs at discounted or even wholesale prices. Alternatively
we would love for a company or companies to match the donations made to this campaign.
We
also need YOUR help to get the word out, to really push this
campaign and help us save Amara's life. Things are desperate
and for the first time in Amara's long battle, her will is
faltering. She has been fighting longer than most teenagers
and children have been alive, the world has changed, technology has
moved on, so much has happened all while she's been trapped in a
torturous grey day that repeats with varying degrees of terrifying
symptoms. That is no life. We NEED your help to colour
in her life with a bit of light and beauty.
We are aiming high.
And we know that. But things
have become desperate. If I had not witnessed this, I wouldn't
believe it could happen in such a prosperous country. Amara can
not only not afford her most basic requirements to exist -
medication, organic food, cleaning and personal products, but even
more alarming is that she has NO access to treatment even by a GP
(she has no access to any doctors let alone a specialist). One of the most gravely ill patients struck down with Lyme
Disease and Co-infections in Australia has nobody treating her because she cannot travel due to severe
chemical allergies - she is invisible. How can this be
possible in our country? How can someone be allowed to squander and left to fight ever increasingly dangerous
symptoms without treatment or support? I'm
not ok with this and that is what this campaign is about. I am afraid that Amara is going to give up and I
will not let that happen and I hope that you will rally with me to
make some noise and really make a difference in Amara's life before
it's too late.
What
you get
For
donations to Amara's cause you will receive:
Up
to $50 - a massive virtual group hug and a shout out over social
media for your contribution to Amara's cause;
$50
- $100 - a bookmark made from a peacock feather featuring all the colours
that represent Amara's conditions and a big shout out to thank you
via social media;
$100
- $200 - a framed print of the blog post 'I live in the last chapter'
from Amara's blog 'Life like this';
$200
- $400 a bookmark made from a peacock feather featuring the colours that represent Amara's conditions and a choice of either a mug or a tote bag in two styles with The Amara Campbell Foundation Logo (see the photos to select style);
$400
- $700 - a framed print of the blog post 'I live in the last chapter' from Amara's blog 'Life like this' and a t-shirt featuring the Amara Campbell Foundation Logo which you can select in various styles for men and women (please see photos to make selection);
$700 - $1,000
- a t-shirt featuring the Amara Campbell Foundation Logo which you can select in various styles for men and women (please see photos to make selection) and a curated Milk coffee table book of Amara's most popular blog
posts, photos and favourite quotes.
$1500 - $2000 - The Golden Prize was just for one special donor but as we had a lovely early claim on this, so we've decided to extend the perk to more donors. The super prize pack; a video shout out via social media from Amara, a bookmark made from a peacock feather featuring the colours that represent Amara's conditions, a choice of either a mug or a tote bag in two styles with The Amara Campbell Foundation Logo (see the photos to select style), a t-shirt featuring the Amara Campbell Foundation Logo which you can select in various styles for men and women (please see photos to make selection) and a curated Milk coffee table book of Amara's most popular blog posts, photos and favourite quotes.
PS remember to think outside the box - you can band together with a few friends and make a group donation to help qualify for the rewards - then you'll have to fight over who gets what, but still the more you donate the more you are rewarded with gorgeous gifts. And the bonus is you're helping someone in the process (check out Change for ME Australia the charity Amara co-founded with her very sick bestie Lee).
Other
Ways You Can Help
We understand that not everyone can offer financial
assistance and that’s more than ok.
There are other ways that you can help.
If you live locally and have any spare time perhaps you could consider
offering a couple of hours a week to Amara’s family to help ease the
burden. Never underestimate your ability
to help. Time is just as valuable. If you would like to assist Amara’s family
please contact us at Aid4Amara@gmail.com
We
know that people can be compassionate when they are aware of the
struggle others face. We also know that people suffer compassion fatigue, you see enough suffering and it's hard not to become numb or turn away. But please do not turn away. Amara doesn't get to turn away. She has to get up and face this day after day, month after month, year after and year every moment getting harder and yet she still comes up with a reason to keep fighting. You can help fight for her, be another voice and together we can make the world of difference to someone who not only needs it but also deserves it.
So please help Amara by sharing her story
and this campaign. Help us make some noise and get the
word out about Amara's situation.
FAQIf you don't have a PayPal account and you would like to contribute to this campaign, there are two options we can suggest to you. You can either ask your loved ones if they have an account you can utilise - ensuring they enter your shipping details in place of theirs - or you can email us on aid4amara@gmail.com and we will advise you on how to participate to ensure you don't miss out on these fabulous rewards.