Leap of faith

A leap of faith! Can you think of a time, where you have had to step into the unknown in hopes of a positive outcome? Isn’t that what we all do most of our lives anyway? My experiences so far have proven this to be true. Sometimes, we just need a leap of faith.

My aunty came down from America to the UK after finishing her PhD in stem cell research. With her extensive background knowledge around stem cells, she introduced me to a treatment that could better my condition.

At the time scientist were excited and fascinated by the prospect of using stem cells to cure various diseases. Stem cells can regenerate any type of cell and promote the growth of cells. It was said that this therapy could help slow down the progression of my disease. On hearing this, my first thought was, if anything could make my life better by even 2%, I’d be willing to give it a shot. China had been using stem cells on patients and had explored various conditions. Friedreich’s ataxia was one of them. I was in contact with a patient who had already done the treatment. They seemed to have improved in strength and strongly recommended it. The therapy showed some promise, but there was nothing to say that it would work.

I was 21 years old, nervously sitting on a plane, on my way to China. Luckily, my mum, sister and cousin were there, by my side, through it all. Even without the treatment, going to China in itself was an experience. After a long flight, we arrived at the airport with another 2/3 hour road trip to the hospital. An exhausting journey indeed. They showed us our rooms and I fell asleep instantly. The next morning, I woke up to a bunch of doctors who had come to welcome and examine me. It was early morning, and they came without warning. The doctor asked me a few questions. There was this one question that I just couldn’t understand. Let me put some context as to why. He wasn’t very fluent in his English, and he asked ‘how’s your urine and caca’. I was like, what is caca?! He was struggling to get his words out, and I was still half asleep, but my cousin was like caca mean faeces in French. Well, Kaka means uncle in Gujarati so, you can understand my confusion. That day I got a glimpse of the hospitals public toilets and was amazed by the lack of hygiene. The hospital itself was very crowded as well. Fortunately, I did not use the public toilet because I got sent to the international headquarters, which was much cleaner.

Over the course of my one month stay, I received six stem cell injections by lumbar puncture. The treatment required me to go through physical therapy (PT) and occupational therapy (OT) every day, which was very intense. I had to do this for the stem cell to have the best effect. But, it put a lot of strain on my body which was quite a painful experience, both mentally and physically. 4 hours a day of continuous exercises and movement, with no room for laziness. My therapist would not take no for an answer, to the point where I would be in tears throughout the whole session. It felt like 4 hours of physical torture, and the only thing that kept me going was the thought that this could improve my condition. My sisters would always be there when I got back from sessions to comfort me with hugs and keep me motivated through it all. I stayed in touch with my family and friends back home, updating them on my progress. It was nice to know that they too, were supporting me.

A week in, I could feel my strength increasing. I was exercising much more than usual which also caused my appetite to increase. Looking back at it now, I feel that increasing my exercise was the reason why I gained more strength, rather than stem cell therapy. However, both were applied at the same time, so the strength could have come from the combination of all therapies.

During my PT/OT sessions, I made friends with other patients that had come from all over the world for various treatment. One of the girls came from India. This was perfect because when the therapist annoyed us, we would speak to each other in Hindi and moan about it. I wasn’t well versed in speaking Hindi but picked up conversational Hindi from the many Bollywood movies I watched. When I came back to the room I would continue speaking in Hindi, and my sisters would look at me funny, thinking, “since when did she start speaking Hindi?”

Getting vegetarian food in China was a struggle, and within the first two days of our arrival, we quickly realised the food here was not vegetarian. I distinctively remember ordering vegetable noodles, with the emphasis on us being vegetarian, and they delivered noodles with shrimp in it! My mum opened the noodles and was unimpressed and annoyed by the non-veg food that was left. The kitchen was not exactly clean, so we bought an electric cooker and made our own food during the stay.

On the whole, this experience was filled with many mixed emotions. I was young, committed and fearful of the unknown but still took the leap of faith. I am grateful that my sisters were there to help ease that leap and gave me the mental strength to go through this process. I would not have been able to do it without their support and love.

When the opportunity arises, we should not let it slip away, even if it means making a decision based on blind faith.

2 thoughts on “Leap of faith

  1. Jaina’s outlook on life and her eagerness not to give in to her disabilities was truly inspirational.
    Her passing was a tragedy.
    She will never be forgotten.


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