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

For: Colleen Daniels
NSW, Australia
Organizer: Colleen Daniels
Stem Cells -vs- Multiple Sclerosis - a campaign for Colleen (Colleen Daniels)
$2,452
of $12,000 goal.
Raised by 18 donors
20% Complete
This fundraiser is closed. Thank you for your support!

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.

THE OTHER PHOTOS ARE JUST ME AND KEL, BEFORE I BEGAN TO LOSE MOBILITY

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 May 31, 2017

Posted on May 31, 2017

I have learnt a lot through this fundraising process, the most incredible thing being that people can be so kind, people I don’t even know, donating just because.  People that I know are doing it tough and have donated, they have brought me to tears.  Some donate because they care for one of my children, or my husband, or just know someone who knows someone who knows someone, or crossed paths with me many years ago, or shared a classroom in my younger days … it really has opened my eyes to the goodness of people.  Then there are the people that have donated in person, always when we least expected it, honestly it has been incredible.

And just knowing that there is such compassion, I know will help both me and Kel through the whole process. 

I know I’m sounding mushy and sentimental but jeez, there are some beautiful people in this world.

I know I don’t need to say this but … while it is me undergoing HSCT (chemotherapy - a bone marrow transplant) Kel is the one who will be holding me up the whole way through, when I feel nauseous, when I hurt, when my hair is gone and I am bald – he will be needing your kindness and support too because it’s going to be a huge emotional drain.  Yeah I know you know, I’m just one of those annoying types that have to make sure of everything.

I was reading the Facebook page of a lady I've met along the way to treatment in Russia (she will start her treatment one week before me) and I share her quote here - because the last line is how I am feeling …

“Don't walk behind me, I may not lead
Don't walk in front of me, I may not follow
Just walk beside me and be my friend” (Albert Camus)

With every donation I feel like we have another friend right beside us – and that is a huge help - thank you EVERYone!


Posted on May 27, 2017

Posted on May 27, 2017

Just a quick note to let you know that this campaign is up and running once again, partly because we are just weeks away from heading to Moscow, and also because i discovered that it was still being shared - so I have restarted it to avoid any confusion and open it for donations once more.  Thank you for your kind understanding,
Colleen

Posted on April 25, 2017

UpdateImage

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

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
Facebook Share Button