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A Day for Chantelle - To Russia with Love
Sun. 28 May 2017, 12:00 pm – 4:00 pm AEST
This is a fundraising event to raise money to send my sister who has been diagonsed with Multiple Sclerosis (MS) to Russia for Human Stem Cell Treament and for her medical treatment costs when she returns to Australia.
This is a family friendly day for supporters to attend to help us acheive our fundraising goal.
A BBQ lunch, & entertainment is provided in your ticket price. Tea & Coffee is also provided.
Adults Tickets are $40, Kids Tickets are free.
All guests will be checked off a guest list on arrival and you must register your details on line to attend.Please ensure you bring your printed ticketed or I.D.with you.
Music, free activities for the kids, auction and silent auction with great opportunities to purchase some great goods and services all donated by businesses and the local community
Drinks can be purchased at the bar. It is a fully licensed venue.
Please read about my wonderful sister below with information on why it is so important to send her to Russia with love.
How can I contact the organiser with any questions?
Please send all questions via message to the Facebook page Facebook.com/medicalfundschantelle
What's the refund policy?
I’m sorry there is no refund on ticket purchases as we are limited to 150 people
Do I have to bring my printed ticket to the event?
Yes, please bring your printed ticket with you
What are my parking options for getting to and from the event?
Parking is available at the venue and street parking is also available
What can I bring into the event?
Please note you cannot bring alcohol or food to this event. Lunch is included and drinks can be purchased at the bar. It is a fully licensed venue
Fox – a mother, wife, daughter, sister, aunty and a dear friend was diagnosed with a progressive, incurable and a neurological disorder, called Multiple Sclerosis. Otherwise known as MS or by its nickname “The Invisible Disease.”
What’s MS? It means the body's immune system targets its own central nervous system - the brain, spinal cord and optic nerves. Due to the role the central nervous system has in the body, many areas can be affected by the disease. Common symptoms include fatigue, walking difficulties, vision problems, bladder problems, pain and cognitive changes.
The symptoms and pain you experience with MS is different each day. You can feel almost normal one day and then the next you can not feel your legs, arms, walk or see.
Chantelle was first diagnosed in May 2016. What started out as fatigue and a little numbness in her left arm, she put it down to just being tired from being a full time working mum of two young girls aged 4 & 2. A trip to her Doctor one Sunday afternoon changed her and her family life forever. She was told to head straight to hospital, the Dr. believes she may have had a minor stroke.
24 hours later, sitting in the hospital bed the neurologist suggests it’s either a brain tumor, motor neuron disease or MS and the only way to confirm is with a lumbar puncture and full MRI of her brain & spine.
I will never forget sitting there holding my baby sisters hand as she lays on the bed with the nurse injecting a large needle into her spine to obtain spinal fluid. Almost an hour and half goes by and they confirm it’s been unsuccessful and they will need to try again. Next is the MRI and after two hours my sister returns to her hospital bed waiting for the news that will change her life forever.
That Neurologist returns to deliver the news, Chantelle you have Multiple Sclerosis. The MRI shows you have 34 lesions in your brain and three in your spine. Chantelle is devastated, all she can think about is her two young girls and if she will be around to watch them grow up.
She is told she is lucky, they have caught it early and with rest and medication, she could still live a normal life but all Chantelle wants is to do is go home and be with her children. They confirm the MS Clinic will be in touch and she is discharged from hospital. For the next two days, Chantelle receives hospital home visits for steroid infusions to minimise the inflammation in her body. She is given three months off work to recuperate and to start planning what will be her new life.
Now with time on her hands, Chantelle starts investigating her options. She want to arm herself with as much knowledge as possible. She begins contacting people with MS, changes her diet, starts mindfulness meditation and waits for the MS Clinic to contact her. Four weeks go by and Chantelle has not heard from clinic. Her Dr. calls to follow up, the clinic confirms a five month wait. Chantelle decides to see a private Neurologist where she is told she will need to start medication immediately. This involves injecting herself three time a day, there is no guarantee the meds will work. She is told there are no medications that will slow the progression of MS, it only minimise the amount of relapses she may have.
Chantelle feels depressed and angry. She has spoken to hundreds of MS sufferers from around the world all with the same story. The meds make them feel terrible, side effects include fatigue, rashes, nausea, temporary blindness and a risk of a brain infection which can lead to death.
Chantelle continues to research and finds a Facebook page, HSCT International. Here she finds information on hundreds of MS sufferers around the world that have undertaken HSCT and the results are promising. She joins and finds herself at the Crown Casino, Melbourne in July 2016 meeting those in Australia that have undergone the procedure. Most show no signs of progression, their MS is in remission. No need for any MS medications. They all tell her the same thing, don’t wait, and get your name on the list. The quicker you get it done, the less damage there will be. They all wished they had done it sooner.
Chantelle finally hears from the MS clinic and during her appointment she mentions HSCT. She is shot down in a second, with the neurologist telling her there is no evidence it works, and its dangerous. Get on the meds. Chantelle decides to apply for Russia and Mexico but she knows average wait is 2-3 years. October arrives, time for her next MRI. She’s remaining positive, she is feeling better since changing her diet and taking time out for herself. The results come in, she is told there is significant progression. There are now 79 lesions in her brain mostly all located in the cerebrum, the area of the brain associated with higher brain function such as thought and action. Chantelle is devastated. She decides to obtain a third opinion from a neurologist in Canberra, Dr. Colin Andrews. He is involved in the HSCT trials at St Vincent’s Sydney.
He tells Chantelle, her MS is very active. She would be a great candidate for the trial however she will need to meet all the criteria, one of those being on medication for some time before being accepted and there is no guarantee.
Chantelle returns to Melbourne optimistic but knows she is deteriorating quickly. Her short term memory is affected. She forgets where she puts things, forgets promising her children she will take them somewhere special. She is greatly fatigued. She knows her best option is treatment overseas.
Chantelle sends her next set of results to India, Russia and Mexico and waits eagerly for a response. She is first put on a waiting list and within a week she is accepted due to her MS being so active. She is accepted by all three countries but Russia is the one she wanted, due to their success rate. There is now hope to stop to this terrible monster, MS.
What is HSCT and how long is the procedure.
Autologous hematopoietic stem cell transplantation (ASHCT) is a type of transplantation that uses the person's own stem cells particularly from peripheral blood. These cells are collected in advance, stored at sub-zero temperatures, and returned at a later stage, after high dose chemotherapy or immunosuppressive therapy.
Steps of AHSCT treatment
1. Stem cells stimulation - 4 days (sometimes 5-6 days, depending on the results of stem cell
collection). The most common side effects are: bone pain, headache, bad sleep, fever and other flu-like symptoms.
2. Insertion of special central venous catheter (dialysis) in external jugular or subclavian vein under ultrasound control for stem cell collection. Then chest X-ray control of catheter position.
3. Collection of stem cells (for 1 or 2, sometimes 3 days). To rebuild immune system, they need to collect 2 or more million hematopoietic stem cells per kg of body weight. Stem cells collection (harvesting) takes 5-6 hours.
4. Chemotherapy (4 days) and stem cell reinfusion.
5. Isolation period (from D+1-D+3 to D+8-D+12). After stell cell infusion, the Patient is in an isolated room for a period of 12-15 days to allow their immunity to rebuild itself.
6. Post Care.
It can take a few months for the immune system to recover after autologous transplantation so it is important to take some sensible precautions to prevent infections during this time.
It is recommended to:
Wear mask during first 3 months in public or crowded places
Avoid contacts with sick people (like flu or chicken pox).
Blood biochemistry screening - in 2 weeks, then in 1 and month
Hematologist examination in 2 and 4 weeks after the discharge.
Neurological observation in 3 months, then every 6 months with MRI results
MRI brain and spine in 3-6 months, then every 12 months.
Post-transplant rehabilitation (under observation of neurologist and/or rehabilitation with a doctor/physiotherapist) – first 3 months at home.
Food restrictions: fresh fruit and vegetables, milk products. No fast food, to avoid raw fish, meat (sushi, etc.) within the next 3 months after discharge.
Chantelle is scared about this treatment, but is clear that it is her best chance of being able to live her life again with her beautiful daughters.
And here’s where you come in.
Chantelle is a person of bravery, strength, inspiration, and hope. We’re rallying around Chantelle to crowdfund her trip to Russia and other medical expenses.
And we need your support to make it a reality.
We might not be able to have the answers to MS, or find a cure ourselves. But helping Chantelle? This we can do. This is something we CAN make a difference in.
Here’s what we’ll be funding:
Pre-treatment: Visit to Hematologist, Doctors and Dentist to check for no infections that could jeopardize treatment.
Return flights from Melbourne – Russia. Business Class on return to minimise risk of contracting viruses.
Travel insurance company with a rare pre-existing condition
Accommodation (35 days) approximately in Russia could be more depending on recovery
Living expenses (35 days) approximately in Russia could be more depending on recovery
Hematologist, specialist appointments, Physiotherapy treatment (3 times a week)
Neurologist – Canberra Based
Medicine – prescription medicine vitamins
Specialist Neutropenia diet required – mostly organic diet
Carers will be required
Will I get updates on Chantelle's treatment as she goes through it?
Yes! We will be posting updates on this page and also on Chantelle's personal Facebook page to let everyone know how her treatments are going and if she is responding positively.
And a final word from Chantelle
Words cannot express how lucky I feel right now...
From the bottom of my heart I wish to thank my sister Maxine for starting up this campaign. I could not even imagine beginning this HSCT journey without you, I love you sis.
To my husband Dara, thank you for your love, patience & support. It’s been a tough road so far but this will be the beginning of a new life for us and our amazing girls, I just know it!
To my mum, brother and immediate family in Australia & Ireland. I could not undergo this treatment without your love, strength, guidance and support. I will be forever grateful.
To my friends, work colleagues and those I have never met, thank you. Your generosity, love, and encouragement will never be forgotten.
Most importantly, to my beautiful girls Lilly & Edie. You are the reason, I will never give up fighting this terrible disease, MS. You are my world and I will love you for eternity x
On a final note, I would just like to highlight how disappointing it is that HSCT is not available in Australia. With a success rate of 86% in halting the progression of the disease, I have made a promise to myself and fellow MS sufferers that I will be a strong advocate to make HSCT available to all MS sufferers.
It is thought that MS is genetic however more information is coming to hand that environmental factors play a large part in this disease. There is no history of MS in either my mums or dads side of the family, so why do I have MS?
Do you know that MS is the most common neurological disease in the world? Most people are diagnosed between the ages of 20-40, but it can affect children as young as six (6) and older people too. Roughly three times as many women have MS as men.
It is reported that MS affects over 23,000 in Australia and more than two million diagnosed worldwide however I believe these statistics are way out. The amount of people I speak to that knows someone with MS and the daily posts I see on Facebook of people being newly diagnosed is frightening.
With the way medical research in heading, I hope one day they will find the cure however until then look after yourselves.
Don’t ever think it can’t happen to you because it can. It happened to me.