Third year raising money to fund life-saving treatment for her boyfriend

A third year at Sussex is attempting to raise money to fund potentially life-saving treatment for her boyfriend.

Bibi Lea-ding, who studies Maths, has set up a GoFundMe page to raise donations for her boyfriend Ren, who suffers from Lyme disease, a bacterial infection that is spread via ticks. It’s an often ignored and misdiagnosed illness that can be fatal to those who contract this disease. There is also a fundraising gig at Komedia run by Bibi on the 10th june, Tickets can be found here.

Ren is receiving treatment in LA currently

Lyme disease is currently not adequately treated under the NHS and so Ren has had to travel as far as Los Angeles for treatment. A passionate musician, Ren has become extremely fatigued because of his illness and could potentially lose his motor functions.

Bibi has been attempting to spread awareness of the disease, which affects over 300,000 people in the US and 65,000 in Europe. Sussex students can contribute towards Ren’s treatment, while donations of £15 or more will receive Ren’s album “Freckled Angels”.

We caught up with Bibi to talk more about Lyme disease and her efforts to save Ren.

Could you provide some background for Ren’s story, when was he first diagnosed?

Though I met Ren fiveyears in to his illness, I’ve caught glimpses of what he must have been like before. He was a highly energetic passionate human being, a proper Welsh lad, who was the soul of the party.

After college he moved to Bath to start a music degree, where he formed a band. He was scouted while busking one day which led to him being signed by Sony. During his second year at uni, when he was 19, he started to have health problems. He describes it as like getting up with the worst hangover he’d ever had, and it didn’t go away.

The doctor visits began and he was sent form one to another to another. At one stage he was diagnosed as bipolar because they couldn’t find anything physically wrong. After a few years he was diagnosed with M.E. and he even went to New York to see an M.E. specialist in 2012 and 2013. However it was his own research that made him recognise his symptoms were similar to Lyme disease and so he went to a specialise clinic in Brussels to get some proper tests done. They came back positive.

How long has Ren been dealing with this and how has treatment been going? 

Ren was misdiagnosed for seven years. Because it’s been left so long it’s very difficult to treat and he’s been left with neurological damage as well as serious damage to his gut which means he can eat only about 10 ingredients. He’s on many supplements to balance it out, and the damage also means he doesn’t absorb enough nutrients from the food he can eat either.

Following on from his diagnosis in Brussels, the doctor prescribed him antibiotics and probiotics and he had to start injecting himself (without any prior guidance or teaching) with immune modulating drugs daily. This wasn’t to target the Borrelia but rather to start work on his gut, to equip him with a more stable working immune system for when he started the hardcore treatments.

Over this time Ren started researching what his options were. He decided, after much deliberation, that he wanted to go down the antibiotic route and be under the care of Dr Jemsek in Washington DC. He came to this decision from reading many patient reports and trusting in the many years of experience this doctor has with treating Lyme disease. That’s when we started the GoFundMe page.

He had his initial appointment at the Jemsek Clinic on May 8, so we’re still waiting to hear the test results. He’s also currently under the care of another doctor in Los Angeles who specialises in stem cell treatment.

At the moment, as I’m doing my final year exams, I couldn’t go with him, so I only get the odd message here and there. He’s having a tough time though, he’s on IV’s every day with all sorts of stuff being pumped into him. A few of his more serious neurological symptoms have started to flare up a bit, luckily this doesn’t happen very often. Only if he’s under a lot of stress or his body is dealing with a new protocol which is too intense.

What support have you been getting from the NHS?  

His situation is now out of the expertise of the NHS, which is why Ren needs to travel to specialists to have a chance of returning to a normal life. In short, no one has a clue what to do to help him, so he’s had to take it into his own hands, which is why he’s spent over £100k and countless hours of research trying to make himself better.

Ren feels quite strongly that he doesn’t want to say anything bad about the NHS but at this point they really can’t do much for him.

What has your relationship been like with Ren? 

Our relationship has been strong. Our qualities are exactly what each other needs.

I am stable, grounded and very patient. I think before I act and I take things slowly, Ren is the opposite. He’s kind and loving, one of those people who likes everyone and will never EVER say a bad word about anyone. He’s incredibly driven and creative, he has an entrepreneurial mind and he makes things happen. The kind of person who doesn’t settle for the norm, doesn’t take no for an answer and always finds a way around the impossible.

Ren was wary about getting serious for many months after we met because he felt guilty about dragging someone into his complicated world and also didn’t want to risk getting hurt or compromising his chances of getting better in any way shape or form. But I knew this was a man I could truly love from the moment I met him, as cheesy as that sounds. I’d never felt like that before so I didn’t ignore that feeling.

I also felt he deserved to be loved and knew most of his hesitations were fuelled by fears, so I tried to make it clear in all senses that I was “safe”, that I knew the implications of what being in a relationship with him would mean and that I accepted them. I didn’t really know what I was getting myself into but I don’t regret a thing.

It has definitely been hard. The times when the pain inside him gets too strong and he gets so close to the edge that he sees no way out are surreal for me. He has said goodbye to me twice, the second time he literally just thought he was going to die that night his body felt so weak. I had a cold so I couldn’t sleep in his bed because of the risk of getting him more ill so I camped out on his bedroom floor and held his hand. It’s in those moments when it dawns on me the reality of my path: if he died, that would be a massive part of my life, the love of my life dying.

If this doesn’t kill him, that’s also going to be a massive part of my life. I literally cannot imagine leaving him, ever giving up on him, not for a second. I will be beside him through however many years his recovery takes. It’s a mindfuck but it’s worth it.

This is a song by Ren and Bibi showing how they have tried to deal with the challenges they have faced.