Fighting PPMS any way we can!

Thank you for taking the time to visit ‘Aaron Attacks MS’ website.

This site has been created to raise awareness about MS (Multiple Sclerosis), 
HSCT (Hematopoietic stem cell transplantation) and in particular our fight against Primary Progressive MS.

This is our family’s story taking you from 2012 when Aaron was finally diagnosed after many years fighting an unknown illness, through our journey from that heartbreaking diagnosis of PPMS to raising the funds and sending him to Russia for HSCT in 2014. The journey continues through to our fight for follow up Chemotherapy and ongoing pain treatment for Aaron in Canberra, ACT, Australia. 

Please visit our Blogs to read our story and our Facebook Community for current news.

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This is Primary Progressive MS

the-cure-cant-come-soon-enough-1

 ~ Pain ~ Weakness ~ Numbness ~ Neuralgia ~ Sleep Deprivation ~ 36+ medications per day
 ~ Increasing disability ~ Decreasing mobility ~ MS paralysis ~ Bladder and Bowel dysfunction
 ~ Infections ~ Cognitive changes ~ Mood disorder ~ Depression ~ Upper limb ataxia ~ Spasms
 ~ Loss of hand control ~ Chemotherapy ~ Methyprednisone ~ Anger ~ Frustration ~ Guilt
 ~ Loss of independence ~ Decreased quality of life ~ Unhappiness ~

The cure really can't come soon enough
 . . .
 

Current Update;

27 OCT 2017: It’s been a little over 3 years since Aaron had HSCT in Russia. As a family we have bitter sweet memories of Aaron’s “New Life” or Stem Cell Transplant Day; the 9th of October. We also have the added bonus of it being 2 years to the day since I collapsed in K-Mart, had a total of 7 cardiac arrests in 24 hrs and a Pacemaker fitted…..

Yes, we are both grateful to still be alive and breathing and yet we try our best to forget the day, and we certainly don’t ‘celebrate’ as most HSCT Veterans do.

It has not been an easy few years for our family, and the last few months/weeks are no exception. The challenges and struggles continue to roll our way, we try to smile (when we can) through all the bad yet somehow it seems to constantly be over shadowed.

I have been looking back at Aaron’s progression since HSCT in 2014, he was 6.0-6.5 (and since diagnosis in 2012 when he was 4.5-5.0) and perhaps HSCT slightly slowed the progression, if only a little, or perhaps this is just the nature of the PPMS beast – I am witnessing the same slow drawn out progression with other friends that are high EDSS 8.0-8.5+ This insidious disease seems to have a mind of it’s own; for a few months the progression can appear rapid and unforgiving and then it is just a little slower but still there, progressing along taking more and more quality of life and abilities away from Aaron…….

There is still nothing Dr’s can offer him for his PPMS; yes there is a new medication available, no it isn’t on PBS and therefore is way too expensive to try, particularly given the success rates are so low.

We continue to travel to Canberra for Pain Management (of the worst type) every 6 weeks, Aaron has nurses every 2nd day for bowel care, we have an attendant 4 times a week for an hour for stretching, physio once a fortnight, and have been blessed to have a new helper 3 days a week around the house (and if Aaron wants and is able for “social participation”). Some weeks the only people (other than the 3 of us) that we speak to in person are paid to talk to us 

There have been a few things happen in the last 6 months that have really kept us going; our son turned 18 and graduated High School! We took a short family bucket list trip overseas, specifically for Aaron. It was damn hard work to say the least but he now has those precious memories to hold close to his heart and so does our son (Huge thanks to my Father for helping make it happen!!). And finally we are renovating our main bathroom to allow Aaron to have access (Huge thanks to TC for stepping up to help when we were left in the lurch).

I truly believe it’s important (especially when your quality of life is so low and you have so few friends) to have things to look forward too – I would love to be able to make more things happen for Aaron, have more for him to look forward too, to make more memories with him while we can ….



**Please visit our Facebook Community Page

for more regular updates and all photos.

October 2015 – 12 months Post Transplant
[This video is for the strongest fighter of all, our survivor, our Warrior Aaron.]
NewsMS Mission Channel Ten Eyewitness News – 12/06/2014
YouTube Link:
http://youtu.be/4jn_PTKGDC8
EyewitnessNewsMS Mission Extra Minutes 12/06/2014
YouTube Link:
http://youtu.be/ocVZ2qy-9×0

About our HSCT Mission:

Aaron is my husband, he is the father of our teenage son and he is only 43; he has Progressive MS
and has not responded to usual treatments.

This site was developed around Aaron’s HSCT journey to HALT MS –  Hematopoietic stem cell transplantation (better known as HSCT) is a treatment that offers an 80% success rate of
stopping MS in its tracks and HALTING further progression .

Unfortunately, HSCT is not currently available in Australia. (other than under Phase II trials – Aaron does not  meet the strict criteria) 

Our HSCT mission began in March 2014. After months of investigating HSCT we watched 60 Minutes and saw wife & Mother Kristy Cruise travel to Russia for HSCT. This confirmed our research and inspired us to contact Dr Fedorenko. Within a few days we had Aaron’s admission date confirmed and we committed to raising the $70,000 we would need.

Aaron traveled to Russia in September and was under the care of Dr Fedorenko at The 7782034_origA.A.Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre for to 28 days receiving HSCT.

This treatment was needed to arrest the development of
Aaron’s progressive MS and give him a chance at enjoying his life.


ABOUT AARON:

[Written at the start of our journey in March 2014 **Please visit our Facebook Community Page for more regular updates and all photos.]

March 2014; Two years ago Aaron could WALK, some evenings we would walk for 5km or more in the local bush just talking and enjoying the fresh air….

Aaron is a Mechanic by trade but it is also his passion and hobby. On weekends you used to find him tinkering on a motorbike or a car in the garage (we even had to build him a bigger ‘shed’ to accommodate all his various tools, equipment, and vehicles of the two and four-wheeled variety) or he’d be out riding or test driving his own or a mates vehicle. We ran our own small motorcycle business and on weekends we were involved in motorcycling and enjoying the outdoors with our son.

That life is all a memory for our family….. now Aaron cannot leave the house unassisted and is confined to life in a wheelchair, daily tasks are a challenge and he feels like he is a burden on his family.

With rapidly deteriorating physical and cognitive symptoms, Aaron needs to get this treatment ASAP
while he is still young enough and strong enough to endure it.

Aaron

Aaron bright and happy in 2012


We hope you will follow our journey via this website and our Blogs.
Updates are also on our Facebook community.

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Here is a collection of stories that have been in the media about HSCT & MS.
For more links & stories please visit HSCT IN AUSTRALIA
Live on Channel Ten morning program
Studio 10 (04/04/14) –
https://www.youtube.com/watch?v=8ignUwEqx24
Kristy’s 60 Minutes Australia
Russian Roulette
(March 2014)kristy-60-minuteshttps://www.youtube.com/watch?v=SRtgFdKmfdo
Kristy’s 60 Minutes Australia
Russian Revolution
(May 2014)
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http://sixtyminutes.ninemsn.com.au/videoindex.aspx?uuid=3586997263001
Hello Russia! Bye Bye MS!
Brooke’s Interview with Diana Rees
on WTA Cntral PA Altoona, Pennsylvania

wtaj-interview

Vicki Wilson’s interview with
Good Morning Arkansas

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Kristy Cruise on Channel 10
The Project 29 JULY 2014:
TheProject_Logo_500x281https://www.youtube.com/watch?v=NI19KdIEPKI

THANK YOU FOR VISITING OUR PAGE!

One Response to Fighting PPMS any way we can!

  1. Aaron and Sam…I am so proud of you guys. Together as a community we are going to get you into the safe hands of Dr Fedorenko. Keep fighting.. xx

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