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Submitted by PatientsEngage on 8 May 2017
Image of Partth Thakur with beneficiaries of the Wishing Factory

#WorldThalassemiaDay 

Partth Thakur, 20, a thalassemia major, started The Wishing Factory to fulfil the desires of the terminally ill. His life that is packed with adventure and altruism for the welfare of thalassemia patients can provide significant motivational influences to all.

"I was born for a reason and all the struggle and endurance is only making me stronger"

You started an initiative called The Wishing Factory to fulfil wishes of people with leukemia and thalassemia. What inspired you to set up this project?

I was 19 when I faced a sudden onset of fear of death. We all know that the average life span of Thalassemia Major Patients is 22 – 26 years. However, most patients in developing countries die before their 16th Birthday. The overall condition is sad and this really made me want to do something for the community.

I have been a single child and my parents have always been working hence I have grown up on my own learning from my own mistakes and interacting with people from all parts of the society. I spoke to my roommate, Neel Patel, about starting something that could perhaps give people with thalassemia their share of happiness so that whatever little time they have, they can live happily. He instantly agreed and we started working along with some friends. We decided to name our organization The Wishing Factory as it had a nice ring to it.

What have been its milestones since its inception?

We started The Wishing Factory with Rs 900 which Neel and I managed to save from our pocket money. We used this money to design our brochures, letterheads and visiting cards as well. Surprisingly, my teachers and family were very supportive of the idea and within a month – the entire perspective changed. We decided to get registered as an NGO and we included 4 main objectives which are:

  1. Provide free healthcare
  2. Free education
  3. Fulfil wishes of terminally ill patients
  4. Spread awareness

A month later I presented this idea to a well known company in Vadodara – Alembic. The Alembic CSR Foundation ties up with NGO’s and provides them funding to function for their activities. They liked the idea and they signed a deal with us to provide us with an annual funding of over Rs 9 lakh. This was a huge milestone for us following which we began conducting various activities in different cities in Gujarat and Maharashtra. We have worked extensively in Anand, Vadodara, Ahmedabad, Surat, Gandhidham, Bharuch, Mumbai, Pune, Delhi and Varanasi. We are blessed to have over 140 volunteer’s however we hope to have more volunteers gradually.

In January 2017, we convinced six eminent people from Gujarat and Maharashtra to be a member in our Panel of Trustee’s. These individuals have helped us to reach to new heights. Recently, we also associated with Jet Airways and Cathay Pacific Airlines as their CSR Partners and we have been doing fun filled events for the patients as well.

How many and what kind of wishes have been fulfilled till now?

We have fulfilled over 193 wishes until now since our inception on 1st January 2016. Some of the wishes have been very innovative while some our mainstream based on basic necessities. One patient, wanted to see Mumbai from a helicopter while one patient recently wanted a bed to sleep on. Most children ask for cycles or some place that they want to see like Manali or Imagica. The funniest yet the cutest wish that we have received was when a 6 year old patient asked us for a box of Alphonso Mangoes.

How old are you and what are you doing currently?

I am 20. I am currently pursuing Master’s in Biotechnology from St. Xavier’s College, Mumbai.

You are a thalassemia major, how do you cope with some of the challenges of your condition?

Well, challenges are a lot and I would say at times it’s very difficult to even express what you’re actually feeling. Blood associated disorders make you feel that you’re a liability since you’re constantly dependent for blood on someone else. However, Aishwarya, one of my best friends, once told me that everything happens for a reason. I still remember her words ten years later, because now that you see, I was born for a reason and all the struggle and endurance is only making me stronger.

Buddha once said that “Every experience, no matter how bad it seems, holds within it a blessing of some kind. The goal is to find it”. I am still pursuing these same words and let’s hope I achieve what I really want to – To end Thalassemia forever.

The feeling that you’ve less time to survive than the rest is always painful but then that’s what has made me value time more than anything else. I try to live each day to the fullest and constantly do my bit for the society so that someday people remember me even after I am gone.

You have not let your thalassemia restrict your life in any way. Tell us about some of your adventures that you have undertaken.

Oh yes of course! Perfect is boring and a monotonous life really bores me out. I love adventures and that’s what really keeps me alive and happy enough to continue fighting. My parents have been really supportive since the start. As soon as I turned 16, they started sending me alone on treks to Himachal Pradesh and Uttrakhand. I love trekking, hiking, mountain climbing, river rafting and, of course, staying in the forests and exploring the wild. Wilderness is not a luxury but a necessity of the human spirit because you tend to see the world with a different perspective. Gradually, I started to travel to almost every state in India. It is fun meeting locals, sharing stories, cooking and eating with them. I have learnt a lot and there are many amazing adventures that I have undertaken along with them.

Recently, I went with a group of friends to Dawki, which is on the India Bangladesh border. There is a small rainforest there where we camped for 2 days with no electricity or food. It was challenging but certainly one of the best experiences I have ever had. Soon by this year, I’ll also do sky diving and scuba diving which were very much on my bucket list since long.

How do you take a break and recharge yourself?

I am blessed with a good group of friends. Some of them really understand and know me inside out and hence it’s a pleasure to spend time with them. We play cricket or go for a swim or on weekends we go on drives or perhaps take a trip somewhere. I also love watching movies and reading books. I love trekking to high altitudes. German philosopher Friedrich Nietzsche once said “On the mountains of truth you can never climb in vain: either you will reach a point higher up today, or you will be training your powers so that you will be able to climb higher tomorrow.” The whole experience of stretching yourself beyond your capabilities is overwhelming and I simply love that.

But, what recharges me the most is going home! I have a pet dog, Brandy. She is a year old German Shepherd and she means the world to me.

What advice do you have for people with thalassemia?

  • It’s very important that you accept the fact that you have Thalassemia and of course the life span would be shorter than the rest.
  • However, each patient must learn to see the positive side of this.
  • You need to live like you have nothing to lose.
  • Work hard and effectively;
  • Love your family and love your friends because they always keep you going.
  • Travel and take a break once in a while.
  • Challenge yourself daily and do something that scares you once in a while because that will help you fight harder.
  • Everything will be okay in the end. If it’s not okay, it’s not the end.
  • Just be excited always and don’t stop smiling.
  • Care more than others think is wise,
  • Risk more than others think is safe, and Dream more than others think is practical because many our born but not everyone survives. So as long as you’re surviving, make sure each day counts.

What do you think needs to be done to ensure a better life for the thalassemia community in India?

India has over 2,00,000 (2 lakh) thalassemia major patients spread across different locations. It’s important that we ensure that the blood is available to them free of cost in all states. Some states like Gujarat, Maharashtra and Rajasthan have already started this initiative.

Especially in some locations, the condition is very poor. Hence we recently started an initiative to raise funds to help establish a Blood Transfusion Centre for Thalassemia patients in Bihar. As there is currently no blood transfusion facility in Bihar - Poornia District, thalassemia patients are forced to travel to Nepal - Biratnagar (a distance of about 400 km in each direction) to avail of life-saving transfusions once every 15-21 days. Imagine the mental and physical stress they’d be going through! Moreover, a single such journey would cost each patient a sum of Rs. 4,000, something that is not easily affordable for a lower middle class family.

By raising funds for a dedicated Blood Transfusion Centre, The Wishing Factory hopes to bring some much-needed convenience into the lives of thalassemia patients and their families. You can see our fundraiser via our Facebook page or go to ket.to/bloodtransfusioncenterphase2

Also, the use of blood filters should be mandatory and the cost of the same should be subsidized because many patients from the rural areas still can’t afford these filters. They filters the anti-bodies and reduce the chances of reaction post transfusion. 

Patients for low income backgrounds must be given free education up to graduate level so that they tend to become self-dependent.

If you had to ask for a wish from The Wishing Factory what would it be?

Nothing for myself as such but I would love to see my parent’s happy and taken care of even if I am not there by their side. Since I am the only child, I really wish that I could stay longer and support them even till they grow old and live happily ever after.

On a lighter note, Mahendra Singh Dhoni has always been my idol and, perhaps someday, I would love to meet him. I have huge posters of him in my bed room, cupboard, etc. He has by far been my biggest inspiration.

Support Blood Transfusion Centre Fundraiser: ket.to/bloodtransfusioncenterphase2

 

Updated 

It is with deep regret that we wish to inform our readers that Partth Thakur passed away in December 2020 at the age of 25. We will always be grateful to him for contributing to the Thalassemia community and the PatientsEngage community.