It’s all in a name . . .

Sometimes you look at a name of a company and you know exactly what they are all about.  Like ‘Jim’s Mowing’ or ‘Michelle’s Patisserie’.

On a sunny afternoon as I walked through the local Kiama Farmers Market, I was brainstorming while looking at the beautiful local produce, trying to come up with a name for my fundraising campaign.

I was coming up with words that meant something . . .

Hope – I have hope that the journey that I am embarking upon gives our family ‘hope’ of a better future.

Love – I know it will be hard, but I have the love of my family, my friends and a love for life that will give me strength as I undertake this lifesaving treatment.

Live – Bottom line – I want to live!

We worked on branding Hope. Love. Live. with a logo and coming up with a blog and website page to help share my experiences.

In ways Hope. Love. Live. has taken on a life of its own. But it is not a business or a well-oiled machine. It is a mother who is doing her very best to get the treatment she needs to be there for my girls (and hubbie) J

The benefit night on 14 May 2016 is our last big fundraising event to help us with the costs for receiving this HSCT treatment. So now I am reaching out for people to book ASAP at www.trybooking.com/KUDK as I need your help to fill the seats to help me make this night a success.

We have some fantastic auction items we will be sharing on my FacebookPage in the coming days, so keep your eyes open and maybe get your passports ready! We also have an online donation campaign to help us get to our goal of $80K. To donate please visit www.chuffed.org/project/hopelovelive2016

I fly out to Russia on 26 June 2016 and I am pleased to say with the help of many, we have raised $39,887K and I am humbled by the generosity of so many people.

What would your name be to sum up your goal for the year? Next year I am planning on mine being ‘Happily ever after’ J

Hope. Love. Live.

Megan x

PS: Look forward to seeing you at the Benefit Night on 14 May 2016 at The Central Hotel Function Centre at Shellharbour.

It's arrived . . .

My ‘to do list’ has been long, short and then long again. I am sure many people would be familiar with the feeling when your list covers a number of pages, but recently I went about simplifying my list. I thought, what do I really need to do to enable me to undergo my upcoming medical treatment?
 

This list came down to the following areas/buckets:-
• Apply for new passport
• Confirm flights
• Apply for Russian visa
• Arrange travel insurance
• Book Accommodation for a couple of nights prior to treatment
• Confirm Neurologist appointment
• Fundraise - Organise ‘Megan’s Benefit Night’ – 14 May 2016

Now obviously there are a number of actions that eventuate from each of these areas . . . The Neurologist is located in Canberra – organise visit . . . upcoming major fundraising event - ‘Megan’s Benefit Night’ . . . well let’s just say that list is growing.

As I sat here today feeling a little overwhelmed by this new ‘simplified’ list that has started to grow before my eyes, I hear a knock at the door.
 
It’s arrived! I received my new passport and I am pleased to say I can now remove a key item from my list. I just keep thinking bit by bit, we will get through this and this time next year . . . well I just can’t wait!

As I work on ticking off other items, I want to thank you in advance for all your continued support. My next priority item is to send out the invite for ‘Megan’s Benefit Night’ to be held on 14 May 2016.
 
With the support of my fundraising committee members, we have some fantastic auction items and prizes being arranged. As a hint . . . maybe you might need to get your passport ready so you can bid on a major auction item on the night, thanks to Hawaiian Airlines.

The invite will be out very soon. Please share and book early to help us with our preparations for this fun filled event! If you have something you think you can donate for the night, please email me at www.hopelovelive2016@gmail.com.

I have had great satisfaction in simplifying my list. If you stop and think, how much can you simplify yours?

Hope. Love. Live.
Megan x

My two little words . . .

I am sure many people have special words that mean so much, whether between friends, family or a word with meaning from a film like ‘Ditto’ from the movie ghost.

I am sure many know of the phrase ‘Actions speak louder than words’. For those close to me in distance, you would have received the heartfelt hug. For those that have sent me messages, you hopefully have received a reply!

But my actions can not be big enough to represent the words that I want to have more context than just letters on this page. My two little words that are so important to me are ‘THANK YOU!’.

I thank my friends that are on my Fundraising Committee that have helped with events, raffles and Surf Club BBQs. I thank the support of the local community and the local media that have shared my story. I thank friends and family who have shared and not just liked my FaceBook page to try and get my message out there. I thank the friends of friends and the strangers I don’t even know . . . and I thank my wonderful husband Jonas and my girls x

Other words that come to mind are grateful, blessed, humbled, overwhelmed, happy, tearful, lost, scared, tired . . . My travel date to Russia is fast approaching (26 June 2016) and these mix of words represent how I am feeling right now.

I’ve had a few people ask ways in which you can help, support and fundraise which we are so grateful for. With the treatment alone costing $45KUS dollars, we have a crazy target to meet and we need all the help we can get!

So IF anyone is keen, it does not need to be big, I have some suggestions!

• Morning/high tea at home or work
• Organise a red clothing day at work (official MS colour!)
• Get all your friends to donate unwanted items and hold a garage sale
• Crazy hair day at work
• Girls night in/dinner party
• Bare foot bowls day
• Golf day
• Even a donation tin at work!

It all adds up, makes a massive difference and we would be eternally grateful!

Any other suggestions are welcomed and you can email me via hopelovelive2016@gmail.com if you would like any advice or some posters done for your fundraising event.

The good news is that donations and activities have now reached just over A$32K! So a big THANK YOU to all that has made this happen!

Our next big bang fundraiser event is in the process of being organised. There will be dinner, live music, auction items, red balloon donations and loads of fun to be had. Please save the date Saturday 14 May 2016 in your calendar! The event will take place in the Kiama region, so for those living afar, we are trying to work on accommodation deals so you can come and visit and enjoy the weekend! More details to come via our Facebook page ‘Hope Love Live - HSCT - A mother's mission to halt her MS’.

Send me a message . . . add a comment . . . say hello . . . share your ideas – this is really emotionally rewarding, but also really hard at times and it is nice to know people are out there.

Hope. Love. Live.
Megan x

WIN News Story

A South Coast mother is facing the battle of her life, hoping to get to Russia for potentially life-changing multiple sclerosis treatment. It's a race against the clock, with more than sixty thousand (60,000) dollars needing to be raised by June, to get her there.
Posted by WIN News Illawarra on Thursday, January 28, 2016

Balance . . .

Balance . . .

In life you need balance . . . when I shared my story of the lifesaving treatment that I need to halt my MS, I did not realise how important balance was going to be.

I first blogged in November 2015 and it has taken me until now to breathe a little and write my next post. In this time I was trying to do everything and anything to thank, promote and advertise my New Year’s Eve fundraising event and my Hope. Love. Live. website.

Due to what I now know as a lack of balance, I became unwell with a constant cold and became really run down. My legs started to not be as strong and walking became challenging. My balance in my thoughts . . . was I posting too much, not enough, had I thanked everyone, had I missed anyone . . . I am pleased to report that my legs have become stronger again, so hopefully the MS episode is improving.

My priority now is to get the balance right. So if I post too much, not enough, miss a thank you – please know that I am doing my best to get the balance right.

In the first weeks I worked with my fantastic fundraising committee and we organised my New Year’s Eve fundraising event. I want to thank everyone who attended and the wonderful people that made the night a success. We raised $2,321 and I am pleased to say since my fundraising efforts began, we have now raised $8928. This money will cover my flights and we are on our way to raising the US$45K (A$66K) required to cover the medical treatment.

So what’s next?

We are running a Thermomix TM5 raffle and I encourage you to buy and share my post from my Facebook page “Hope Love Live - HSCT - A mother's mission to halt her MS”. I really need help with selling the tickets. You can find all the details on my website www.hopelovelive.com.au or go to http://www.trybooking.com/JYCC to purchase your tickets now!

I am now on a countdown to my wrist surgery on 22 January 2016. Back to no eating, dressing and driving for myself. I want to thank my wonderful husband for picking up the pieces. Some people ask how do you get through . . . trying to stay as positive and ‘normal’ as possible is my coping mechanism. Thanks to all around who allow me to achieve this, as without you, none of this would be possible!

My lesson for 2016 is to have balance. Is there somewhere you can stop, breathe and assess to see where balance in life will help you?

Until next time . . .

Hope. Love. Live.

Megan x

PS: Thanks to all for your kind donations and support! Very much appreciated.

Welcome

 

Hello, I'm glad you're here. 

 

Today, you are reading this blog because you are one of my family, friends, friend of a friend or a person I am yet to meet. You may be a person with multiple sclerosis or someone that has an interest in HSCT. Whoever you are, you’ve come here because you chose to.

 

 

Over the years I have sheltered many from my struggles with MS as I want to be known as ‘Megan’, not the girl that has MS. As my life changing HSCT journey begins, I promise to peel back the layers and be open, vulnerable and as honest as possible.

I hope this blog will be an emotional release for me as I go on this journey, but also a way to share my journey with others.

So what's this blog all about anyway?

Hopefully you've taken the time to watch the short video on this page... (quick, watch it now!).

Ok, so now you know that I have multiple sclerosis and have been accepted for HSCT (Haematopoietic Stem Cell Treatment) in Russia, where I will be under the care of Dr Denis Fedorenko at the A.A.Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre.

This treatment has an 80% success rate of stopping MS in its tracks and HALTING further progression. It is expensive (approx US$45,000) and comes with risks and a long recovery period after treatment. This treatment is not radical or experimental, just relatively new to the MS world. Dr Fedorenko has performed this treatment on 100s of patients with autoimmune diseases over the last few years.

Thanks to pioneers, like Kristy Cruise, HSCT has been exposed to those living with this unpredictable and progressive disease as an alternative treatment to the current disease modifying drugs.

I have been on three disease modifying drugs and they are no longer working for me. HSCT is my hope for a better future with my husband and three beautiful children. I believe it is my right to seek and receive the best medical treatment available.

HSCT treatment is done in a number of countries and there are many Aussies heading to Russia, Singapore, Mexico, Germany and the USA. The cost varies depending on length of treatment and country, but all are expensive and out of many peoples reach.

Like many Aussies before me, I will need to fundraise as much as possible to pay for this treatment.

Do I want to do this . . . I have little choice if I want to try and stay as well as I can for my family and the future.

My aim is to halt the progression of my MS and to do that I need to go on this journey.

I'm on a mission. It'll be tough. It'll require sacrifice. It will test my strength and faith. I will learn from it and grow closer to the person I desire to become.

Hope. Love. Live. – HSCT - A mother’s mission to halt her MS - This is the name I have chosen for my journey, blog and Facebook page.

Thank You for taking the time to read my story.

I hope you visit again soon.

Hope. Love. Live.

Megan x