Some people enter this world with the understanding that they are here only to enrich the lives of others. Our Aunty is one of those people.
It is both incredibly noble and extremely frustrating. It still baffles our minds that someone with so much love to dish out doesn't believe she deserves any herself.
When she was diagnosed with MS it was devastating.
It shook the very core of our family.
But you wouldn't have known that she was unwell. She never complained. She never asked for any help. She continued to love her life. Putting everyone before herself. She always tried to keep up, work hard and do what she could to maintain an ordinary life. Even through her own pain she protected us from seeing the debilitating effects of the disease, so we wouldn't pity her.
As her MS progressed she started slowing down. She had no choice but to stop working. She stopped driving. Stop walking long distances unaided.
When she first heard about HSCT treatment she asked what was the point?
Our Aunty has no partner. She has no children. She thinks that because of these reasons her life is not worth saving.
She thinks she has no legacy to leave behind. But that's because she can't see what we see.
She's a superhero.
A lead character in the story of our family. All our stories, are futures are intertwined with the love she gave us.
So now we want to give her something she has never had before. Hope.
Hope that you don't need a partner or children to feel truly loved.
Hope that maybe this treatment will help to halt MS in its dirty tracks.
Hope that we are all here with you.
We honestly don't know how we are going to raise the money needed for the treatment but we know that everyone that knows this woman will do all they can to help.
Mary has been approved for HSCT treatment in Russia for February 2018 and we want to do all we can to get her there.
What is MS?
Multiple Sclerosis (MS) is a debilitating disease, which affects the central nervous system. The nerve fibres, which make up our central nervous system and transmit messages from our brain, throughout our body, are wrapped in a fatty sheath, made of a substance known as Myelin. In MS, the Myelin sheath is attacked causing inflammation or damage. Areas of scarring (Sclerosis) result and these scars can disrupt or even block signals within the brain and spinal cord. These scars may cause loss of nerve fibres as well as their ensheathing myelin.
The disruption or blocking of nerve signals within the central nervous system causes a variety of symptoms, depending on which areas of the brain and spinal cord are affected. Symptoms may include: Loss of coordination/clumsiness, speech difficulties, hand shaking/tremor, extreme fatigue, sight impairments, memory lapses, vertigo, weakness, impaired sensation
MS is a progressive disease and as time goes on, symptoms may become more severe.
What we’ll be funding
Stem cell treatment in Russia is not covered by the public health system in Australia and therefore the costs fall onto the patient.
1. Medical costs: Stem cell treatment This hospital provides the non-myeloablative HSCT treatment protocol. The approximate medical cost of this procedure is US$50,000+ and is all-inclusive for Mary only. Sometimes some blood transfusions and smaller procedures might be necessary, depending on the patient.
2. Non-medical costs The family member that would accompany Mary as her carer will also have day-to-day expenses while in Russia. Daily costs would include food, transportation, as well as accommodation. HSCT requires the patient to erase the immune system and then be housed in a completely sterile environment where no one is allowed entry other than the doctor and a nurse. For such reasons, Mary's carer have to seek their accommodation for the entire duration of the stay.
3. Flights for Mary and her carer from Canberra to Moscow. Business class will be required on the flight home to minimise the risk of infection.
4. International Health Insurance & Visas While Mary will be cared for, the carer accompanying her will also need international health insurance coverage for the stay in Russia. Travel valid travel insurance for the entire time of visit, is necessary in order to obtain a Russian visa.
Both Mary and her carer will require a visa to go to Russia. A single entry visa, tourist/leisure via which should be sufficient for MS therapy costs. We will also need to organise a passport and paperwork to submit in order to get the visa.
6. Accommodation The procedure takes an overall 21 days to complete from the day of arrival. This includes the pre-operation check-up, as well the post-operation check-up. However, the usual in-patient hospital stay is 30-45 days, however, the accommodation arrangements for Mary's carer will need to be for 1-2 months.
Once the procedure is done, the doctor also recommends that the patient stick around for another week or so in Russia so ensure that no other post-operational complications arise.
7. Day-to-day Extras Mary's carer must also take into account day-to-day expenses such as transportation to and from the hospital and elsewhere. Other expenses will include food, laundry, phone or internet options, as well as other utility bills if need be, such as a cable connection or any sort of shopping.
Once Mary is out of the hospital, the doctors recommend a week’s stay in Russia to ensure that everything is completely under control after the stem cell treatment and operation. During this week, Mary may need special digestive foods.
Pre-treatment: Visit to Hematologist, Doctors and Dentist to check for no infections that could jeopardise treatment.
Post treatment: Hematologist, specialist appointments, Physiotherapy treatment (3 times a week), Neurologist appointments, medicines – prescription medicine vitamins, specialist Neutropenia diet required – mostly organic diet.
Among the small amount of countries that offer HSCT (hematopoietic stem cell treatment) for MS, Russia is one of them. In recent years, there has been a lot of media attention on the new stem cell treatment in Russia that has been proving to help MS patients significantly. As a result, many Australians are now considering to receive treatment overseas at the A.A. Maximov Department of Hematology and Cellular Therapy, National Pirogov Medical Surgical Center in Moscow, Russia under the care of Dr. Denis Fedorenko.
This treatment although in it’s early stages, has proven to be one of the new leading treatments available with many patients around the world witnessing huge improvements in their health as a result.
Currently, stem cell therapy is an unapproved treatment for MS in many countries including Australia. For this reason, patients across Australia have now considered treatment overseas in Russia.
There are two kinds of HSCTs offered to MS patients; myeloablative HSCT and non-myeloablative HSCT. In Moscow, the medical center offers non-myeloablative treatment for MS. Non-myeloablative treatment is a less harsh procedure. This treatment uses chemotherapy to treat the patient’s immune system so that the lymphocyte population is diminished and not completely removed.
The patient is then infused with their own bone marrow using immunosuppressant drugs so that the immune system can replenish itself with new B and T cells that have no memory of having MS. This therapy basically resets the immune system, however does not erase it completely so the patient need not be revaccinated with childhood vaccines etc.
Stem Cell Treatment for MS Steps
1) Pre-operational examinations: This one week period is used to perform some routine tests to ensure that the patient is free of illnesses and fit enough to undergo the procedure.
2) Mobilization: Injections are given to stimulate stem cell growth in the body before they are extracted for the procedure. There is mild pain or fever which can be easily treated with mild pain killers or fever reducers. This procedure continues for 4 days (twice a day).
3) Apheresis: This process is when blood is collected and then separated into its separate parts. This is also what’s done when you donate blood. The immune cells, red blood cells, and stem cells are separated from whole blood, and while the red blood cells are returned to your body right then, the rest is frozen and stored for the infusion later on.
4) Chemotherapy: In 4 days, the immune system will be almost destroyed so that the new cells can be translated back into the body. At this stage the patient experiences discomfort due to the heavy chemotherapy as well as faces risk of infections and other immunity risks. The patient is now cared for very carefully and is not allowed to have any visitors for a while.
5) Transplant: The stem cells that were extracted earlier are not reintroduced into the body to proliferate and bring the immune system back to life. There are generally some discomforts experienced here like fever, diarrhea, nausea, cough etc.
6) Engraftment: This is the step when the body is left to rest so that the immune system rebuilds and starts learning to defend the body against foreign objects again. Blood tests will prove how well the immune system has been growing. The patient can now continue their recovery at home.
7) Recovery: For a minimum of 12-18 months and up to 5 years, patients see the reversal of their MS symptoms and actually experience 45-80% of their symptoms disappear. This is how long the stem cell treatment for MS will take in order to see long term impact of the treatment.