Anne's Appeal for Stem Cell Therapy for MS
I have aggressive Multiple Sclerosis (MS). I need to travel for Stem Cell Treatment to put the MS into permanent remission.Auckland
My name is Anne Besley. I am a 49-year-old mum of an amazing teenage daughter Devon, wife to my wonderful husband Brett and a part time wedding and funeral celebrant.
In 2006 I was diagnosed with Multiple Sclerosis (MS) when my daughter was 1 years old. My journey with MS has been a very long one and a big roller coaster.
I worked as an operating theatre nurse educator but found very quickly after my diagnosis that standing was a challenge, I was constantly dropping things and breathing became hard, so I had to move to a nursing administration job, giving up the job I loved. Eventually working at all became too difficult as my illness not only challenged me but also my employers.
The nerve pain I had was tremendous and whilst the third drug did manage this, ultimately it proved I needed a much more powerful drug as walking became very difficult again. I again had to give up my beloved nursing career as cognitive issues resurfaced, my memory became worrying, I started to lose my hearing and developed another scary symptom called laryngospasms which could close off my airway.
I was put on a 4th much stronger drug that has helped my MS symptoms considerably. I have however now been tested positive for the John Cunningham Virus (JCV) a virus which means that this 4th drug is now dangerous for me to take as it can cause a fatal brain infection called Progressive Multifocal Leukoencephalopathy (PML) given the positive result for this virus.
If I come off of this drug, all of my old symptoms will come back (breathing difficulties, laryngospasm, nerve pain, walking issue to name a few) and the MS will progress. However, if I stay on it, it’s very possible that I could suffer the brain infection that the virus exposes me to. The risk I face for this brain infection is 1:333 escalating to 1:125.
Multiple sclerosis is an autoimmune disease where the body’s immune system attacks its own tissues. There is no cure for MS, just a progressive slide into permanent disability.
Hematopoietic Stem Cell Therapy (HSCT) for the treatment of MS is a pioneering treatment successfully used overseas in just 3 countries (Russia and Mexico – Russia by far does treats the most cases and has the best success) to “reset" a person’s faulty immune system. The treatment involves harvesting stem cells from the bone marrow, followed by chemotherapy to shut down the faulty immune system. Stem cells are then given back to grow a new healthy immune system. Patients stay in the hospital for a month for the treatment until they are well enough to travel home.
This treatment will save me from the threat of a fatal brain infection, and I don’t have any other options. I need to raise NZ$120,000 so that I can receive Hematopoietic Stem Cell Transplantation (HSCT) at the leading clinic A.A Maximov Clinic in Moscow. All of the funds raised will be spent on my treatment at this clinic, my flights, and also flights and accommodation for my husband who will come over for the final week of treatment and help me travel home.
This treatment is led by Dr. Denis Fedorenko, the Leading Haematologist of Russia, Doctor of Medical Sciences, Professor of the Department of Haematology and Cellular Therapy. He has performed this procedure to hundreds of patients with a high success rate (for my form of MS this clinic has an 85-95% success rate that there will be no further progression in my disease). For many patients there has also been an improvement in general mobility and functionality.
I feel like they I am staring into the depths of darkness, pain, disability and dependency. For years I have been fighting this insidious disease, and at times I feel desperate because I seem to fail on all the drugs I have been given. For the first time, I really feel hopeful that there is a treatment that may completely halt this disease and allow me to live a more normal life and be there for my family.
Any contribution you can make would be most gratefully appreciated.
Use of funds
The money will spent on travel, tests, the stem cell treatment.
Other page links
I am updating you all to let you know that between this givealittle page, personal donations, and an amazing quiz night I have reached my goal!!
I am deeply grateful to you all for your help. I have been helped in so many ways, not just financially. People pitched in with organising auction items, people donated auction items, my little team of ladies who helped me organise everything not only kept my sanity but rallied around and offered all kinds of help and support. I had close family friends set up the most amazing quiz night and wouldn't let me help. That collected a whopping $10K alone in one night! The support has come in all forms; emotional, moral, not to mention financial. From complete strangers to close friends, I have been embraced, loved, supported and helped in ways I could not imagine. What would I have done without you all? Due to the nature of my situation I was also eligible to tap into my Kiwi Saver. I cannot thank you all enough. I am deeply humbled by your kindness and compassion. I am definitely feeling the love! Due to me reaching my goal well ahead of time I am going to shut down this page.
To keep up the spirit of giving and kindness that has been shown me, I will be paying it forward. When I am up and working again, I will be keeping my eye out on these givealittle pages and donating when and where I can. and looking for other pay-it-forward opportunities.
If anyone would like to follow my journey, I have a Facebook Page. Please note that I am no longer going to Russia for this treatment, but now to New Delhi, India. The link to the Facebook page says Anne2Russia but I wont change this now in case I lose the page. This is the link if you are interested.
Once again lovely people, from the bottom of my heart - THANK YOU, from my family and I! I am going to India to get a rebooted immune system to hopefully put this MS into a permanent remission, and this has happened becuase of your kindness.
I hope you have a wonderful week.
Hi! Thank you so much for your donation to me, I am very grateful for it. Anne
Hi there, thank you very much for your kind donation to me, I am very grateful to you! Everyone has been amazing, I am very humbled! Thanks so much Anne
Hi, and thank you so much for this very kind donation. I am so very grateful to you. Wow, everyone has been so kind. Thank you! Anne
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This page was created on 5 Jul 2019 and closed on 24 Sep 2019.