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Help Steve Crush MS with HSCT

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This is Stephen, he’s been my husband for nearly twenty years, the father of our two children and he has MS.  Stephen was diagnosed with Primary Progressive Multiple Sclerosis in July of 2017. Only 10-15% of individuals afflicted with MS have this aggressive form of the disease, and because of this there are very few treatment options available.

We were unprepared for how quickly and drastically it would change our lives.   Those that know him, would see him using a putter as a cane for the first six months or so.  Eventually, he needed a brace on his right foot, and a cane.  By summer of 2019 he needed a brace on both feet, a cane and hand controls to drive his car.  He currently struggles with his hands, writing or signing his name, using utensils to eat.  Imagine waking up everyday and discovering a new challenge with your body and the simplest day to day tasks.

He’s unable to play golf, ride his bicycle with me or the kids.  Attending family events like the kids’ sports, or even going to the movies has become difficult.  He gets easily fatigued doing daily activities and errands. Even with using handicapped parking, navigating the parking lot and walking the distance to an entrance is challenging.  Getting to his son’s lacrosse games or his daughter’s volleyball games is difficult and he’s prone to tripping as his legs become more tired.  One time he tripped in front of a full stand of spectators at a high school volleyball game.  (He popped right up though and pretended nothing happened with a grin on his face).  This disease has greatly affected our family, and while we do our best to shield our children, they clearly can see the changes in their father and the effect it has had on all of us, emotionally and physically.  

Steve's doctors have tried the only FDA approved medication for PPMS and while this gave us hope, the unfortunate reality is that his mobility and health have continued to decline even more rapidly than before.  Steve is running out of time and options.  Over the past year his Multiple Sclerosis has progressed in such a way that it causes him to suffer from severe mobility and balance challenges, extreme fatigue, numbness, tingling, heat intolerance, "MS hug", and spasticity which makes his day to day life difficult. 

However, there is a treatment called HSCT (Hematopoietic Stem Cell Transplant) which has been proven to STOP disease progression in people with PPMS with an almost 75% chance of success.

HSCT is a chemotherapy based medical procedure that ablates your immune system and reboots it using your own stem cells harvested from your blood or bone marrow. This is the only Medical procedure currently available that has halted the progression of the majority of patients undertaking it. (It is not 100% guaranteed in halting everyone's disease, but the odds are in our favor… and with medications not working, what is the alternative?) This is a very invasive treatment and this option is not available to everyone with Multiple Sclerosis, and is currently only performed outside of the US.  We are so excited and blessed that Steve has been approved to receive this life-changing treatment at Clinica Ruiz in Puebla, Mexico.  

This has not been an easy decision for Steve and our family, but after much prayer, we know that our hope and trust in Christ will get us through.  Unfortunately, this treatment, even with its documented success rate is not covered by insurance and carries a hefty price tag that needs to be paid for by us, in advance of the treatment.  The cost for this treatment is over $75,000 USD which includes some of the costs of travel and caregivers during the treatment.

What we’re all challenged with on a daily basis is hard to put into words, it causes worry and stress.  But we all want the best possible outcome in this and that’s for Stephen to receive this procedure and not continue to decline.   Please help if you can by prayers, donation or sharing, any and all is greatly appreciated more than you know.  

*If you’d like to support Steve's efforts to be well but don’t want to do so through this site, you can use Venmo as well: @HelpSteveCrushMS.


For more information about HSCT:
The articles listed below will give you plenty to read.  These links are to articles in the news about HSCT as well as talks and publications by experts in the field.

Positive outcomes of HSCT: 
https://www.wcpo.com/news/insider/stem-cell-transplant-has-stopped-progression-of-northern-kentucky-mom-s-ms

https://www.bbc.com/news/health-43435868

https://ottawacitizen.com/news/local-news/running-man-in-less-than-a-year-ms-patient-goes-from-barely-crawling-to-running-a-marathon/

https://multiplesclerosis.net/living-with-ms/first-steps-confessions-hsct-survivor/

https://multiplesclerosisnewstoday.com/blog/2016/08/22/an-american-tale-of-hcst-for-monday-columns/

https://ipscell.com/2018/04/patients-powerful-story-on-multiple-sclerosis-and-getting-experimental-stem-cells/

http://www.dailymail.co.uk/news/article-2691026/Desperate-mother-Multiple-Sclerosis-traveled-Moscow-successful-stem-cell-transplant-procedure.html

https://www.msif.org/news/2017/05/03/long-term-outcomes-ahsct-ms/

Dr. Burt’s talk:
Hematopoietic stem cell transplantation (HSCT) for Mutiple sclerosis
https://www.youtube.com/watch?v=bvCgXpQiU1w&t=174s

http://n.neurology.org/content/90/15_Supplement/S36.004

From NMSS:
https://www.nationalmssociety.org/Research/Research-News-Progress/Stem-Cells-in-MS/Bone-Marrow-Stem-Cell-Transplant-%E2%80%93-HSCT

https://www.msif.org/news/2017/05/03/long-term-outcomes-ahsct-ms/

https://www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies/hsct

Blogs/podcasts of HSCT recipients:
http://themscure.blogspot.com/
https://hsctwarriorspodcast.com/

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    Co-organizers (2)

    Terra Levy
    Organizer
    Lynnwood, WA
    Stephen Levy
    Co-organizer

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