Karlia's Hope - A Fight 4 Life

£95 of £50,000 goal

Raised by 11 people in 55 months


Little Karlia Craig is 6 years old and lives in Mackay, Australia with devoted Mum Coraley, older sister Rachael and michievious dog Chili.

When Karlia was just 2 her family got the devastating news that Karlia has an incurable life threatening muscle weakening and wasting disease called Minicore Myopathy. Drs told Mum Coraley to take her home, love her, that she would die. Every parents worst nightmare had come true.

Little is known about Minicore Myopathy as it is (There are currently only 2,000 documented cases in the world with it) Even less is known where they are in Australia. Mum had no choice but to start planning her baby girls funeral through medical advice.

Fast forward 2 years later, little Karlia was still here. Despite reaccurent pneumonias and lung collapses Drs just couldn't contemplate she was still fighting. Coraley by this point had faught for every single thing Karlia needed to stay alive. A g-tube so she could be fed through her stomach, casting to correct her clubbed feet, an adjustable bed and even her wheelchair so she could take her out to do the things normal kids her age did. Basic human rights were being denied this sweet girl through Drs ignorance. But if the family hadn't been put through enough little did they know the worst was yet to come.

Minicore Myopathy causes generalized weakness throughout all skeletal muscles, the heart and the lungs. Many of it's sufferers develop a rapidly progressive curvature of the spine (Scoliosis) and if it is NOT corrected with surgery, the heart and lungs start to literally become crushed by the curving spine resulting in a painful, undignified death.

In the UK and US these operations are preformed every day on people with muscle disease to give them a better quality of life and help them live longer. But in Australia this little girl is being denied the right to live. Drs have told Coraley that they "think" Karlia won't make the surgery because of her weak lungs. Yet here in the UK the operations are preformed on patients who's lungs are much weaker than hers. Mum feels they just don't have the means to support her breathing through surgery and aftercare so rather tell her they won't do it due to her condition.

Karlia is in alot of pain with her back and if she doesn't get the surgery known as "Growing Rods" she will die. It's already severe and it's already caused her hip to painfully pop out its socket under the pressure.

With the help of us at The Minicore Project ( www.theminicoreproject.co.uk) - the only information and support resource for families with Karlia's condition - our plan is to raise enough money to get her a second opinion in the UK at Great Ormond Street Childrens Hospital.

We need to raise enough money to fly Karlia, Mum and sister Rachael to the UK First Class as she will need a seat that lays back due to pain and needing changed on the flight. She cannot tolerate sitting for too long of a period and as you can imagine it's an extremely long flight. We also need money for accomidation and equipment such a hoist, electric bed and a few other bits so Karlia can be comfortable while on her visit to get that much needed 2nd opinion.

If the Drs at GOSH determine THEY can do the surgery, the fundraising will be on going. Growing Rods require surgeries every 6 months until the child reaches their full height. That means the family will have to fly and stay in the UK every 6 months.

If Karlia gets the surgeries she desperately needs she could live well into adulthood and have a much better quality of life than she does now. The other aspects of the condition can be managed with equipment, medications and preventative measures. The biggest hurdle is getting the operations.

This is her only chance! Please help if you can.

To read more details of Karlia's Journey please visit
http://www.theminicoreproject.co.uk/karlia-s-hope.html

To order t-shirts, collection tins, banners and more to do your own fundraiser in aid of Karlia please e-mail
fiona@theminicoreproject.co.uk
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While Karlia and her big sister Rachael are having fun ready to go to a "Blast From The Past" disco, behind the scenes Mum Coraley is in pieces. This week Karlia attended the spinal clinic to see if the back brace has helped slow down her spinal curve at all. Everybody following Karlia's journey shed tears when her Mum posted on her Facebook page "Congenital Myopathy: Karlia Craig" that despite the brace her curvature has progressed rapidly to 90 degrees.

As much as a shocker it's been for us to hear, is 1000 times worse for her Mother to bare. The fact she can do nothing to stop it or get her team of specialists to change their minds. Karlia's ONLY Hope to survive is to get the surgeries abroad. But sadly we are running out of time.

The Minicore Project has made countless efforts to raise funds via sharing her story, social media, the #muscles4minicore challenge, the ice bucket challenge and other families who've managed with the same condition who successfully got the surgeries like myself are planning fundraising events in her aid. But like many can imagine you've got to have money to do a fundraiser to make money for the cause, which families with this diagnosis struggle with anyway. We've even approached many celebrities but none have wrote us back bar Comedian John Bishop.

The last thing I want to post is that Karlia didn't get the money she needed in time. She has come so far, defied the odds and gotten stronger in other areas Drs thought she'd never achieve. Karlia enjoys life so so much, why should she suffer like this? This little girl needs help and she needs it NOW,!!!

So plz donate, share, retweet anything you can.
Blast From The Pasf Disco
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I wanted to take a moment to talk about equipment that a lot of children and adults with muscle wasting disease that affect breathing use to fight simple things like coughs and colds. For those with respiratory weakness a cold can turn into pneumonia overnight. A life threatening situation for such individuals and unfortunately pneumonia and other respiratory illnesses are what around 90% of those like Karlia will die of.
In recent years machines like the Cough Assist, Nebulisers and BiPAPs have become common place in the homes of affected families, these machines provide a life line. Most people with lung weakness cannot produce a productive cough. Without a strong cough, the mucus remains in the lungs compromising breathing and it quickly becomes a dangerous situation. The Cough Assist acts like a vacuum in that it forces air into the weakened lungs to take a larger breathe than the patient can normally do, then it quickly sucks the mucus out. The nebuliser delivers a mist of medication into the lungs to break up hard to shift mucus making it easier to cough up or in turn easier for the Cough Assist to suck it out so the patient can breath easier again. The BiPAP is a non invasive ventilator. It works via a mask and breathes with the patient but pushes the lungs to get a bigger breathe and in turn also helps them exhale better. When someone with muscle disease has significant breathing issues the BiPAP helps give the person a break by assisting their breathing. Some use it every night, some just when they're ill and others use it as needed.

Each one of these machines prolongs the life of people like little Miss Karlia, it makes life easier too and means less hospital stays bringing better quality of life.

But Karlia only has one of these machines, the BiPAP. Why? Because her medical team think the cough assist and nebuliser won't help her, she will die anyway. So access to these life saving machines are denied. Appalling isn't it? No child should be left to suffer when others with the exact same diagnosis around the world are getting these bits of equipment as standard to try and prevent life threatening situations. Yet somehow this little girl doesn't deserve the same care? It is beyond wrong, it is sickening in every way possible.

Right now sweet Karlia is fighting yet another chest infection and she doesn't have the tools to help her through it.

Mum Coraley wrote on Karlia's FB Page;
"Karlia has caught a bug, or something, she is presenting with chest infection symptoms, She had been off a bit last week, explains why she didnt want to go to school and why she is so exhausted, her sats are around 90-93 without bipap. looks like she may be in for a nasty one. This hit pretty quick and if she feels anything like me as I have it too, we both got sick at the same time, she is going to be quite tight in her chest and have a sore throat. Karlia is on bipap now with pain meds in, hoping tomorrow isnt a trip to the hospital"

Can you even imagine the fear her mother feels in these situations?

I've approached a charity in Australia known as the Variety Club to hopefully get Karlia a Cough Assist, but as for the nebuliser it costs about £45. I'm hoping via this page we can raise the additional money to get Karlia this machine.

Please donate if you can. Karlia deserves the tools to help her fight. If she has any chance of getting the Growing a Rods surgeries...she needs to be as strong as possible. Her life depends on it.
Cough Assist Machine
Nebulizer Machine
Karlia on her BiPAP machine
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October saw the launch of our latest fundraising campaign in aid of Karlia's Hope - the #Muscles4Minicore Challenge! Since we rolled it out we've witnessed an overwhelmed response from The Minicore Project community....that is other families with the same diagnosis as Karlia.
Although other affected families have embraced the challenge to help the Craig family, to our great disappointment we are struggling to get non affected people involved in this little girls struggle. So I'm reaching out to everyone seeing this post to please consider participating in the #Muscles4Minicore Challenge on Facebook & Twitter. You have our permission to SHARE, SAVE, PRINT AND POST our posters below anywhere you feel Karlia's plight will be seen and heard!! We truly appreciate any and all involvement from caring people like you. Thank You from the bottom of our hearts
Karlia's Hope Poster
#Muscles4Minicore Challenge Poster
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Karlia is home with Mum and her big sister. Drs being their usual unhelpful selves didn't get to the bottom of what exactly was going on and sent her home despite SATS dropping to below 90 at times. Leaving a very worried Mama feeling like yet again she's left to deal with things on her own.

This is an unfortunate pattern in Karlias medical care. Something no family should have to be subjected to. This is the grim reality of a precious little girl who's trapped with a medical team who have lost Hope long ago, just because she has a diagnosis so rare they know so little about. Yet somehow they feel despite little evidence that Karlia will pass away from the condition. Which is WRONG, this sweet life will be robbed of her from them refusing to give her the surgeries she so desperately needs!

Please time is not on Karlias side, she needs the spinal surgeries as soon as possible. Please donate anything you can to get her to Great Ormond Street Children's Hospital where there's specialists who know all about Congenital Myopathies and have everything needed to ensure Karlia gets the care she deserves.
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Read a Previous Update
Carole Barbiere
53 months ago

As a grandmother with a young granddaughter affected by a congenital myopathy, I know something of the heartaches and frustrations that come with the condition that is both a rare and complicated one. The rarity of minicore myopathy is why it doesn't get the support in needs. Please give what you can ... you can make a difference. Thank you.

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£95 of £50,000 goal

Raised by 11 people in 55 months
Created May 25, 2014
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£10
Anonymous
51 months ago
FK
£10
Fran Kinnstein
52 months ago

Keep fighting gorgeous girl!! Big hugs xx

HT
£5
Heather taynton
52 months ago

I hope you reach your goal soon xxx

£5
Anonymous
55 months ago
Carole Barbiere
53 months ago

As a grandmother with a young granddaughter affected by a congenital myopathy, I know something of the heartaches and frustrations that come with the condition that is both a rare and complicated one. The rarity of minicore myopathy is why it doesn't get the support in needs. Please give what you can ... you can make a difference. Thank you.

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