We never plan to get sick… especially not with a rare condition or in need of a life-saving procedure that isn’t covered by medical aid, let alone our own pockets. And fundraising to keep living is definitely never thought of!

Fundraising has become an important part of living with a rare condition. It has allowed many of us to keep living; to see that doctor; to have that operation; or even join a trial. For me, it was having the first ever stem cell transplant for Myasthenia Gravis in South Africa.

Getting to the point of having to ask friends, family and even strangers to help fund your medical treatment is never easy, and we explored every available option before we had to do this. We consulted with many doctors around South Africa, and they were in contact with doctors overseas who had successfully done this trial treatment. We sent this information on to my medical aid, and when this was denied, we appealed it after doing further research and requesting my treating doctor to motivate for it. When this was denied yet again, we approached the treatment centres overseas to see if they would accept me there – which they would, but at an expense that included travel and accommodation.

There was constant communication, constant reaching out to the medical aid, and constant phone calls to see what other information we could possibly submit to make the transplant a reality. There wasn’t one single day where we just sat back, and I think this was really the start of my realising the importance of getting all the facts, never giving up, and constantly calling whoever possible to make this life-saving treatment a reality.

There were loads of tears and absolute despair, but there was also a fire deep inside of me that wouldn’t allow myself to give up.

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So when the medical aid decided once and for all that they wouldn’t cover this, we had to look at what our other options were. We approached the doctor who was willing to complete the transplant, and asked for an estimate of what this transplant would cost – from the hospital stays, to the medication, to the blood tests, and the transplant itself. Medical aid wouldn’t pay for anything, so we had to ensure that we knew beforehand a good rough quote of what we needed to raise.

Once we had received this quote, we set up a fundraising campaign through BackABuddy I wrote out my story, found some pictures, and received references from my doctor and Rare Diseases South Africa that I sent to them so they could authorise my application. You can choose to have the funds paid directly to the bank account of the doctor/hospital so all donors can be sure of where the funds are going as well. [There is a 5% administrative fee that Backabuddy takes on all donations, so keep this in mind when selecting the amount that you need to raise.]

I was assigned a specific contact person at Backabuddy who helped me with ideas on how I could improve my reach, better my profile, and hopefully reach my target. They were very helpful, kind and patient with me; and their advice made all the difference.

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Photo by Andrea Piacquadio on Pexels.com

Next comes more work… but it is the only way you can make your fundraiser work. You need to share, share, and SHARE the link for your fundraiser. Share it on your social media pages, ask your family to share it to theirs, and get your friends to share it with their networks too. Reach out to media houses, radio stations, and celebrities. Make sure that as many people as possible are seeing your link – even if they can’t personally donate, they can share the link and potentially reach someone who can.

Make sure your fundraising platform has constant updates on where you are in the race to fundraise, what reaching the next milestone means; and post updated information/photos/videos. If possible, I would also recommend creating a social media page to keep people updated with all this information as this also makes it easy for others to share your updates and reach others. You never know how your post could encourage others to keep fighting, or even just touch a person so that they want to help you win your battle. If possible, share them to your local Facebook groups/pages as well.

Hosting events (physical or virtual) is also a great way to get people involved. Phone around for donations and form a raffle of sorts. Get branded clothing made up that people can order with some of the funds going into your kitty. Ask to host speaking events at businesses/corporates to tell your story. Get local businesses involved, and be sure to publicly name each of them and show your thanks for their generosity.

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Messages of thanks are vital. There is an option to set these up as automatic responses on the Backabuddy site, but I would recommend personally contacting everyone who gives to your fundraiser as a sign of good favour and thanks. Whether it be R50 or R50,000 – they all deserve to be acknowledged and appreciated. And those small amounts do add up, so don’t ever discount them!

Once you have reached your target, send out another thanks to everyone and remind them of what this means to you. It means a chance at health, and a second chance at life. Share your dreams, aspirations and excitement. Again, if you have a specific social media page for your health journey, share it all here as well so people can celebrate with you.

Fundraising is hard work, but it is so worth it. I can say with 100% conviction that I wouldn’t be here today if it weren’t for the generosity of friends, family and strangers towards my transplant. Don’t give up. Keep trying. And always keep fighting for a better tomorrow.

{Original article written for Rare Diseases SA here}


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