Hi, I am Janine from Ukraine.
Unfortunately, I face a big problem with my health. Since 6 years old, I was suffering from a strong pain in my back. At 15 years old I was diagnosed with intramedullary spinal cord tumour - by that time I could hardly walk. The correct diagnosis came too late to save my spinal cord and soon after I became parallelized from the waste down..
Now I am 37 years old, all these years I was living with a hope the tumour will not grow very fast, as our doctors did not suggest the operation. Nevertheless, the tumour reaches level Th5 to L2. Furthermore, there is a large Syrinx above the tumour which reaches up to level C2.
I lost the ability to feel sensations in my body, up to my chest, and I no longer have control of my bladder and bowel. It was a big barrier for me, as I wanted to stay active and not stuck at home.
If my tumour keeps growing further, it's inevitable that I'll lose movement in my arms. This scares me greatly. The severe scoliosis of my spine means I can't sit without using my hands to support me, and I have to keep moving to alleviate the pain in my back.
I've got a quote from German hospitals, estimating operation costs of around €50,000. We think when you take into account travel, post operation care, recovery, suitable accommodation, etc., and that once examined further the cost could be higher, we should aim to raise €70,000.
I don't have this amount of money.
The operation would remove the tumour and straighten my back, so it will be easier to sit and possibly also reduce my body spasms.
I know there are a lot of kind people who are ready to help, one of them Lyle Hopkins, we have become friends for a few years now. Since he has known about my problem he has been trying to find money for my operation and significantly improved quality of my life through medical supplies recommended by UK doctors and nurses that he arranged for me to visit.
As Ukraine cannot accept PayPal payments and YouCaring requires a PayPal account, Lyle is acting as my sponsor. If you would rather donate directly to me instead, then I found a way through BitCoin. Full details about this and my history are on my site SaveJanine.com. Either of us is happy to talk to you or meet with you if possible.
I really appreciate any help and support, and it means a lot to me.
We have also created Facebook and Twitter pages, where I will do updates or answer any questions. Also, you can visit my site SaveJanine.com or help with sharing my story to spread awareness.
Thank you so much for your support.
Please read the updates below for changes as the situation progresses.
Janine and I have been friends for a few years now. We'd known each other for over a year before she told me about the problem with her tumour. Since I've made efforts to help her, but as yet haven't managed to raise the money needed for her operation.
I have at least managed to improve her quality of life a little. Over the last three years, I've funded:
- her trips to the UK
- her private consultations and MRI scans
- medical supplies
- English lessons
- the building of the savejanine.com website and associated campaign
We were able to improve the quality of her day to day life through improved medical supplies and practices recommended by the UK doctors and nurses. Her level of English has gone from being very limited, to a level good enough for regular conversation.
This project appeared quite straightforward at first.
Step 1 - Get a quote.
Step 2 - Fundraise the money needed.
Step 3 - Save Janine.
However, we've hit a number of setbacks along the way, and even getting past step 1 was hard. The doctor we saw in the UK told us that the MRI scans we had paid for in Ukraine were of low quality, and we needed to do some high quality ones in the UK. The cost of which was over a thousand pounds. After we the scans, the doctor took some months to come back to us, and in the end wasn't able to help as the operation needed was not within her speciality.
This was a massive setback and very frustrating. The majority of the other doctors we contacted ignored us. We found another in the UK, but he wanted to see Janine in person before giving us a quote, wanted further scans, and by now Janine's UK Visa had expired. With me as the only sponsor the costs had already gone into the thousands, and we feared that another trip would end with him telling us he wasn't able to help.
Janine made contact with a hospital in Germany that after much back and forth provided us with a quote. At least then we had an idea of how much money we would need to raise, and had something we could point to during the fund raising.
The fund raising has been the hardest thing. It's quite disheartening to do presentations to rooms full of people and businesses, several of which will give you words of support afterwards, but not actually receive any donations. I've had conversations where people without any experience of fundraising of this kind have told me that it shouldn't be hard to do, that it's not much money really. But in reality it is hard, and it is a lot of money. There are always obstacles that come up, and at the end of the day, not a lot of people donate considerable sums to individual causes like this.
It looked like we had all that we needed to keep pushing for step 2, but then the revolution came followed by the war between Ukraine and Russia. With it brought more problems still. There was and in many ways still is a lot of uncertainty. Travelling became even harder. The banks limited account transactions.
There are barriers to fund raising when you are in Ukraine. It important to make donating easy, making it hard reduces the number of people that'll donate. Ukraine doesn't have proper PayPal support, users can only make payments and not receive. The vast majority of fund raising platforms online use PayPal exclusively. In countries like the UK and US, donations of this kind are tax exempt, however in Ukraine the laws surrounding this are not so clear.
One solution is for a third party, such as myself, to collect the money on Janine's behalf. But of course this presents its own problems and can be off putting to potential donors. With so many scams online, people are rightly nervous about anything that looks out of the ordinary. Janine found a solution through Bitcoin, but again, many will be unfamiliar with the digital currency.
However, every day Janine's condition deteriorates, slowly but surely. So we can't wait any longer for better solution and now it's time for the final push. We are launching the site, I'll pay for some advertising on social media that'll hopefully pull in more than the spend. We are contacting philanthropists and alike hoping to find people that'll make large donations. With luck, this summer will end with Janine finally getting the operation she needs to stop the deterioration and reduce or eliminate the pain she is in.
If you are considering making a donation over $500 then Janine and I are more than happy to talk to you on the phone/Skype. If you are considering a very large donation then we are more than happy to meet in person. Please get in touch here.
If you have experience with fundraising of this kind and would like to help, please do get in touch.