Stem Cells -vs- Multiple Sclerosis - a campaign for Colleen

For: Colleen Daniels
NSW, Australia
Organizer: Colleen Daniels
$1,452
of $20,000 goal.
Raised by 17 donors
7% Complete
Donate Now

The Story

** THE FIRST VIDEO ABOVE EXPLAINS THE TREATMENT I AM SEEKING

**
THE SECOND VIDEO ABOVE IS MY MS STORY

**  THE CONSENT FORM PHOTO SHOWS AN EXAMPLE OF RISKS ACCOMPANYING AVAILABLE DRUGS PROVIDED TO MS SUFFERERS IN AUSTRALIA. I SIGNED THIS PARTICULAR FORM AS THIS DRUG WAS ONE OF FEW LEFT TO ME, ALL CARRIED SIMILAR SERIOUS RISKS.

In a nutshell ...I have Multiple Sclerosis (MS).  Had it for nearly 20 years.  Which sucks. 

I used to walk normally but now I’ve got this slow walking weak legged limp thing going on, thanks to MS.  It’s really awful.  

Thing is, there’s this stem cell transplant thing they’re doing.  But not in Australia, not any more.  The bigwigs said it wasn’t ‘ethical’ so they can’t do it here now.  Never mind that people here who were fortunate enough to have it done are now back to living normal lives, they've gone back to work, they're taking their kids to school, doing the housework, mowing the lawn - all the stuff they couldn't do because MS stole their 'normal' - some still have limits but nothing that interferes with living an everyday kind of life.  So, I guess you can imagine how that makes many other Aussies with MS feel.  (See the 'Today Tonight' video I've included in this campaign for info on all that, it's the first video shown - ta lots). Anyway …

That means I have to go overseas if I want to have it done.  My husband and I have researched lots to find out more.  Turns out they’ve been doing it for years, safely, in quite a lot of other countries.  So I’ve booked myself to have it done, in Russia! Heading over there in July this year, 2017.  But it costs buckets of money.  So here I am crowdfunding to help with the cost of flights and one month's accommodation in Moscow, it’d be terrific if you could help with a donation, every little bit will help, and will be truly appreciated!

If you'd like to make a donation please do that through the link on this page - THANK YOU SO MUCH!

A more detailed version of my story:

ABOUT ME AND MULTIPLE SCLEROSIS (MS)
In 1998 after many medical exams resulting from an episode of weakness in my legs the year before, I was diagnosed with Multiple Sclerosis.   By the time of diagnosis the weakness had gone and everything seemed back to normal.  I didn't know anyone with MS, certainly no-one in my family had ever had it - so the MS diagnosis came completely without warning and was totally unexpected.  I don't know what I expected, probably just a prescription and a pat on the head - but I do know I sure didn't expect to be handed an incurable condition.  

Multiple Sclerosis is an (awful) progressive and incurable (to boot) disease of the Central Nervous System.

While the weakness disappeared quickly and the disease seemed to have little impact for quite some time, I know now how devious MS can be - it gives you a little knock every now and then, and you think it's not that bad really, until all those little knocks develop into something much bigger and you realise that this evil thing has been festering in your Central Nervous System just waiting til you're weak enough for it to attack. And so, I’ve now moved on to Secondary Progressive Multiple Sclerosis, which in simple speak is the second stage, and where many people land after around 15 years. With MS, you never know what tomorrow will bring, but you do know that it won't end up being good.

I had just turned 40 when diagnosed.

These days, while I’m determined to keep walking I often need the aid of a walking stick or walker (or the arm of an innocent bystander) to help me get around.  

Now.  Independence is truly a hard habit to break - and these days that's got to be incredibly frustrating for my family, and dangerous for anyone who happens to be in my way!  Because (perhaps foolishly) I’m struggling to hold on to my independence.  Often I don’t walk too well and it’s glaringly obvious, but even so I simply can’t bring myself to ask for help - even on my ‘bad days’ when I know that without help I’m bound to fall, trip or injure myself in some hideously embarrassing way.  I like to think of it as being brave, you'd probably have a different word for it.  Fair enough.

Anyway, after almost 20 years battling Multiple Sclerosis (MS) I'm giving myself permission to ask for help this one time.  Because there is a treatment that offers hope! 

Good news at last, but not simple for an Aussie - early in 2016 I saw a TV report about Haematopoietic Stem Cell Transplantation (HSCT) for Multiple Sclerosis, a treatment that appeared to be incredibly successful (again, if you want, you can check out the 'Today Tonight' video I've included in this campaign to see for yourself).  Naturally I was interested and began searching for more information.

The upshot of many hours of searching and reading, was to discover that this procedure had been successful to varying degrees for all but the more advanced stages of MS.  While with any medical procedure there can be no guarantee, some people have had almost miraculous recoveries, and many have seen progression of their MS stopped.   None of the available treatments in Australia can claim the same, they all are marketed as having the ability to slow the disease progress.  I have not had that happen, my disease appears to follow a standard course.  MS has already thrown many challenges my way and I have survived them all, including facing drug side effects that included possible death (yes, truly), drug trials that did nothing except offer false hope, not to mention the never-ending physical changes that need adapting to.  

We all want something that puts a stop to MS

HSCT offers the actual possibility of a change for the better, and a stop to disease progression.

Worth notingis the fact that HSCT has been performed in other countries to treat MS patients for several years (eg Singapore, Mexico, Israel, Russia).

I have been accepted for HSCT at the A A Maximov Department, National Pirogov Medical Surgical Centre in Moscow, and will be having the treatment in July 2017.

After months of my and my husband's research, one constant is that HSCT is the only treatment that has been shown to stop progression of MS, and also offers an actual possibility for some of my current ‘symptoms’ to improve – as things stand, right now I havezero chance of any improvement or halt to progression - but HSCT offers an actual chance, and gives us hope.  

By the way - I've tried many different treatments available here in Australia - daily injections or tablets, and monthly infusions as well as taken part in an international drug trial - despite all of which, I'm still a textbook case of MS - in my humble opinion the available treatments here have done little if anything.  Of course I'm not an expert, I just have MS.

THE WORLD NEEDS A CURE FOR MS AND MANY OTHER AUTOIMMUNE DISEASES, AND THIS TREATMENT IS A MAJOR STEP IN THAT DIRECTION.

What’s it all cost?

  • The cost for this 30-40 day procedure in Russia is approximately $AU80,000.  My accommodation in hospital is included in this but our travel costs, and accommodation for my dear husband (Kel, who will travel with me) are not.  Yikes huh?  I know it seems impossible, but my goal is to raise enough to at least help cover the travel and accommodation costs which I estimate to be around $25,000.   Any and all donations will help ease the financial burden and will mean the world to us.
  • If  more than needed is raised it will go toward treatment costs.  Any monies raised over and above costs we encounter during my HSCT will be donated to another Australian scheduled for HSCT.


Final note:

The decision to undergo this treatment is a very personal choice.  It has taken many months to make the decision to go ahead, and my husband, family and friends naturally support me.  I know this affects every single one of my loved ones, and I thank them for their enormous love, understanding and support.

That's about it!  Thank you so much for your interest.  And apologies for making you try to pronounce haemowotsit (I'm still not sure how to spell it!)

AND P.S:  This is truly not intended to offend in any way at all  - but for those of you who know my hubby, you'll understand that he claims to be learning to speak Russian - and tells me that so far he has mastered 'Vodka'.   So, I'll be in safe hands ...

Note: With your donation, the $2.50(?) contribution to YouCaring is optional, I believe the amount can be edited to $0.

------------------------------------------------------------------------------------------------------------------------------
There really should be a stronger word for what MS does to a person. Something that covers cruelty, and the undeserved destruction of a perfectly functioning body. ‘Symptom’, that is much too kind a word”

Anonymous

Fundraiser Updates

Posted on April 25, 2017

Posted on April 25, 2017

Thank you all for your donations, they have been much appreciated.  But I am closing this particular campaign, because we are less than three months away from heading off to Moscow and have some different fundraising activities in the works, to help us on our way.  Linked to those activities is a new online crowdfunding campaign -https://youcaring.com/FromNararaToRussia - which we haven't kicked off quite yet but it is 'live' online so of course feel free to share, every single dollar helps!
Just for your interest, we are booked to fly out of Sydney on 15 July, and return on 18 August.  We have booked and paid for those flights, submitted our visa applications, arranged travel insurance and booked accommodation for my hubby, Kel, at a nearby hotel. Apart from our night of arrival and the night before departing I will be staying in the hospital.  All of that has added to over $20,000, but we knew it would, so no surprises at least ... and your donation did help with these things 🙂
We have already linked up with 8 others who will be undergoing HSCT in July as well, and that is proving very useful already, especially for the people travelling with us I think, as they will all be staying at the same hotel so will be able to help each other find their way around etc. I feel much better knowing that too :)
i do hope this update reaches you, I will do my best to update everyone after our return as well - until then, stay kind and be good to yourself too 👋 Colleen and Kel

Posted on February 19, 2017

Posted on February 19, 2017

Hi,
For those that don't know me personally, I know it probably seems like it ... but MS certainly isn't what I'm all about - MS has limited the things that I am physically capable of, and without going into all that stuff, I guess because of that I've found new things that I enjoy - and the reason I'm waffling on about all that is I made a video today!  Through messing about online I've discovered that I really enjoy creating videos - so just for something a little different ... hope you enjoy thank you, Colleen ... fingers crossed and a deep breath here - there should be a link, or a video here somewhere!
Campaign for Colleen - video update

Posted on February 14, 2017

Posted on February 14, 2017

Hi everyone, I hope 2017 is treating you well – but doesn’t time fly!   Here it is, February already and I’m wondering what happened to January!

And while July 2017 and HSCT felt ages away just two months ago, it’s feeling quite close now - it seems to have moved to the ‘this is really real’ place in our minds – and I think that somehow helps to push things along, and I’m sure before we know it we’ll be boarding the plane to Moscow wondering how on earth we managed to get so far.

I have to say that it really is a ‘feat’ – the research about the treatment, the checking of and finding of facts, searching for facilities that provide the treatment, researching each of the facilities, seeking out others who’ve had the treatment, discussing with your doctors, and so much more – then once you’re satisfied with the legitimacy and safety of the treatment, just making the actual decision to proceed can take months.  If only HSCT was once again available in Australia, what a difference that would make!

But here we are, our flights to and from Moscow are booked and paid for, wheelchair assistance at each airport is arranged (I can’t walk too far), I have ceased taking medication (*which I really thought was doing me no favours anyway!) in preparation for chemotherapy - and my condition is the same; hubby’s accommodation is awaiting confirmation, and visas, well, this is the part that makes me a tad nervous – only because it’s a quite different process – but we have started the ball rolling toward getting our Russian visas.

So we are getting there, and as our pockets get lighter I think it’s probably a fair enough time to let my personal point of view be known.   If you’ve watched the Today Tonight video in my youcaring campaign you’ll probably understand my thinking, but, as briefly as I can put it …

  • I’d much prefer to have the treatment here in Australia, but it was stopped by an ‘Ethics Committee’
  • While I well understand that clinical trials take time, being born and raised in ‘the lucky country’ I struggle to understand any argument that a treatment used with such high success in other countries has been and remains denied to me in my own country
  • While people in other countries (including Spain, Singapore, Israel, Russia, Italy and Mexico) are receiving HSCT early in their disease and regaining mobility, those with MS in Australia are left to deteriorate as their disease progresses - and that's just wrong
  • As one extra point, there are many approved drugs that Australians with MS are asked to consider, all of which claim only to slow the disease progress. The ‘side effects’ of these approved drugs are frightening, as you will see in the *consent form attached, yet we are denied HSCT usually with claims of the exact same possible side effects.  This is difficult to understand, when HSCT is already approved for use in other conditions, and in its use for MS the treatment is actually less harsh.  PS: Re the consent form - our doctors do tell us the possible side effects, and often that these drugs do work, and without any other option many of us sign those consent forms, and take horrible chances because maybe just maybe this or that drug will be the one that helps.  I tried half a dozen different drugs since diagnosis, to no good effect.
  • HSCT stops the progress of MS
  • *See attached document -  ‘consent form’.  (bet you simply can't miss the typo)

Before I close, apologies for asking but could you please share my crowdfunding campaign, once more on Facebook, and if you have a Twitter account, LinkedIn or any other way of sharing online could you share like mad?  Every cent is going toward flights, accommodation and expenses while in Moscow, plus if possible nursing/domestic assistance on our return.

Thank you again for your kind donation – until next time,

Colleen

About the Organizer

Report Fundraiser

Report Fundraiser

Please report potential fraud and Terms of Service violations only. Personal disputes will not be reviewed.

We require this in case we need to contact you for further details.*

* YouCaring will not distribute your phone number to any third parties or use it for marketing purposes.

Comments

Supporters

Add Our Donation Widget to Your Site
Grab Our Widget

Stem Cells -vs- Multiple Sclerosis - a campaign for Colleen

Grab Our Widget
Donate Now