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Rubiana's history, from diagnosis to now
My name is Rubiana Malla. I am a multiple sclerosis (MS) patient from Vancouver, BC, who was diagnosed in 1992. Since that time, my MS was relatively stable until nine years ago, when it took a turn for the worse. I stopped walking with a cane in 2010, and stopped driving within a few months. However, as recently as 2018, I was able to swim a dozen consecutive laps in the pool using my arms. I was also able to walk in the pool with the aid of active assistance initially to get me started (after which I could do it myself), and a floating device to hold onto, or holding the edge of the pool. I could also weight bear on dry land when using a standing lift to help get to a standing position, and then holding onto a grab bar to maintain the erect position. In late February of last year, I took an extended trip to India, where my arms and shoulders were badly injured by physical therapists there (because they do not have machines to assist with standing). As a result, I am currently not able to use my arms or therefore resume my therapy in the pool, because they do not have standing lifts there or any other assistive devices. Up to now, I have never had pain or fatigue, and I have always had full sensation in my entire body including my legs.
Rubiana's salvation - HSCT stem cell therapy
HSCT is a well proven stem cell-based therapy that completely eliminates the old immune system, and allows the body to rebuild immunity from scratch. The new white blood cells no longer see the patient's own nerves as the enemy, and the autoimmune response that characterizes MS is halted. The patient is then able to rehabilitate to recoup some of their lost function, through very hard work: no longer running up a down escalator, their hard work can finally pay off, and hard work post-op is what ensures that it will pay off. Considering her innumerable life challenges, Rubiana is the hardest working person I have ever met.
In more detail, from the clinic website
"Hematopoietic Stem Cell Transplantation (HSCT) is an established chemotherapy medical treatment demonstrated to be effective to halt disease progression in neurologic autoimmune diseases such as Multiple Sclerosis (MS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Transverse Myelitis (TM), Neuromyelitis Optica (NMO) and Myasthenia Gravis (MG), all of which are treated at Clínica Ruiz. The “Mexican method” to autograft MS patients employs high dose Cyclophosphamide and Rituximab as conditioning agents to eliminate autoreactive cells of the immune system responsible for damaging autoimmune disease. This treatment approach is a safe & tolerable, yet highly effective non-myeloablative chemotherapy regimen that has been shown to be highly effective to halt underlying autoimmune disease activity & progression. Serious treatment complications are rare, with fewer than 2% of patients requiring hospitalization. Clínica Ruiz is the largest patient volume autoimmune disease HSCT treatment center in the world. Doctor Ruiz Argüelles and Doctor Gómez-Almaguer have performed more than 2500 HSCT procedures during more than 20 years for hematological and autoimmune diseases, out of which over 600 have been for MS. Their transplant related mortality is 0.16%, among the safest treatment records in the world. Positive results have been achieved in over 78% of patients transplanted at Clínica Ruiz, which includes both relapsing and progressive patients."
Is this all marketing mumbo jumbo?
NO. This is real science, as two recent Canadian clinical trials demonstrate. It just so happens the Mexicans are 20 years ahead of Canada in this area.
1. Atkins HL, Bowman M, Allan D, Anstee G, Arnold DL, Bar-Or A, Bence-Bruckler I, Birch P, Bredeson C, Chen J, Fergusson D, Halpenny M, Hamelin L, Huebsch L, Hutton B, Laneuville P, Lapierre Y, Lee H, Martin L, McDiarmid S, O'Connor P, Ramsay T, Sabloff M, Walker L, Freedman MS. Immunoablation and autologous haemopoietic stem-cell transplantation for aggressive multiple sclerosis: a multicentre single-group phase 2 trial. Lancet. 2016 Aug 6;388(10044):576-85.
2. Uccelli A, Laroni A, Brundin L, Clanet M, Fernandez O, Nabavi SM, Muraro PA, Oliveri RS, Radue EW, Sellner J, Soelberg Sorensen P, Sormani MP, Wuerfel JT, Battaglia MA, Freedman MS; MESEMS study group. MEsenchymal StEm cells for Multiple Sclerosis (MESEMS): a randomized, double blind, cross-over phase I/II clinical trial with autologous mesenchymal stem cells for the therapy of multiple sclerosis. Trials. 2019 May 9;20(1):263.
How have we calculated our fundraising goal?
As a longtime MS patient who today has very limited mobility and lives on disability assistance, Rubiana does not have money to pay for this lifesaving surgery herself. Clínica Ruiz has been the world's leading provider of HSCT therapy for MS patients for 20 years, yet they are very fairly priced. Their fee includes the surgery itself, plus lodging in a private, sterile environment adjoining the hospital for both Rubiana and a caregiver over a period of three weeks, during which Rubiana's errant immune system will first be eradicated, then rebuilt from the ground up with stem cells, and finally stabilized before she is sent back to Canada. The US dollar cost from Clínica Ruiz at today's exchange rate plus allowance for airfare totals approximately $90k CAD, hence our goal of $95k CAD, with the relatively modest extra $5k to allow for possible exchange fluctuations between now and then, as well as additional unexpected expenses. Any leftover money not used in the course of Rubiana's surgery will be put towards her post-surgical rehabilitation program.
At MS+15 years, Rubiana could still walk with a foot strap, and spent many hours each day working out in gyms and pools, trying as hard as humanly possible to maintain her function - always with that smile
Hard work in the gym is what kept Rubiana mobile much longer than her MS peers, and will allow her to make the absolute most of her HSCT treatment
In the past, over 28 years, by working out in pools, gyms, and physical therapy centres, I have had numerous periods of partial recovery from the devastation of the MS, but have never been able to recover fully, because I have always been trying to walk up a downward escalator. I make gains, then the gains are taken away, then I work as hard as I can, and make more steps forward, before another slide backwards. The uphill battle is so damaging psychologically because I know without this uphill battle, just how hard I can work (and always have), and the benefits that could give to me. When I work out, I improve, always. This is why I am very optimistic that if only the MS can be turned off, all my hard work will pay off.
At MS+20 years, despite working out harder than anyone I ever met for many years, Rubiana was now in a mechanical wheelchair, yet her smile persisted
What surgical outcomes will Rubiana consider a success? - they are modest, but need not be, she will work harder than anyone to maximize the results
First, I would value so much to be able to use a computer keyboard again, so I can complete a Master’s degree and open a private practice as a Counseling Psychologist. I have been through so much, and want to offer help to others with similar experiences. I want to become a contributing member of society, rather than be someone viewed as a drain on the system. But there are many other MS symptoms that I have been plagued with, that I would also like to resolve. For example, the tremors in my hands and loss of fine motor skills not only affect use of a keyboard or smart phone, but also even something as basic as eating or drinking in public. Regaining control over my bladder and bowels would also be so valuable. Even if I never walked on land again, it would make every difference to my life to resolve even a couple of those symptoms. But I also know that if my reduced balance and coordination are improved, I would have a real chance at walking, if I first return to the pool every single day, and work up from there.
Today, Rubiana is confined to a power wheelchair with limited use of her hands - because despite all the hard work in the world, the relentless attack of her errant white blood cells eventually wins, unless we turn off her disease
IT IS NOT TOO LATE. Help us turn off Rubiana's disease for good, so that she can hit the gym and pool harder than anyone on Earth, to first rebuild her body, then complete school and attain her dream to help counsel others with similar life challenges
If you help fund my operation, I absolutely promise you I would not let you down, and lie around waiting for some miracle recovery. I would work harder than anyone, and enjoy every minute of it, knowing my fight is finally on level ground. This opportunity is worth more to me than anything. Please be aware that I am aware of the risks. Given where I am now, and where I know I could be if given this opportunity, the risk reward for me is unquestionable, even if it means a risk of death.
I hope you really consider my plea. If you help fund this life saving operation on me, I would be forever indebted and forever grateful for helping me turn off this downward escalator.
- Michael and Carmen Van Zanten
- Cynthia Sayre
- John Bentley
- Eric Sayre
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