Arti’s story

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As a child, I would always be super creative and design a picture on the Microsoft software called Paint, or even use colouring pencils to create a picture of a house. I would always draw one and never knew why, but now being an adult, I realised it represented what family actually means to me and how much having a roof over my head, with my family, makes a difference.

My father was born with Polio, in 2005 he had to have his left leg amputated. The condition me and my sisters have (Muscular Dystrophy), had genetically been passed down from my father. As we grow older, we are told our condition will deteriorate.

Although I was young, I could see my father’s condition worsening; my mother would be our full-time carer, she would do all the housework and look after my dad, me and my sisters, all at the same time!

I thought with this condition, I would never be able to complete anything, but I managed to bag a Games Modelling, Animation and Effects Degree with a 2:1 in 2016. I was only able to stay so positive about it all thanks to my father’s teachings.

In December 2011, my father passed away. When it all happened, it came as a big shock to myself and my family, as we always thought of him as an invincible superman! I lost my confidence, my power to stay positive and I couldn’t be as motivated as I was before. It affected me so much, that my depression and anxiety worsened. Everyday I think “what would dad say…?’’, ‘’what would dad do…?” and this, slowly started to encourage me.

Inspiration and Support: My father was my hero and he also loved computing. That’s when I realised that I picked it all up from him. In my head I would say to myself “thanks dad…” and look up at the sky. I never thought I would get this far in my life.

After losing my dad, I, as any person would, got even more scared as I now only have one parent, and losing my mother would cause so much trauma to my sisters and me. This then led me to stop thinking so negatively and stay positive. I cannot thank my mum enough, for being both a mother and father to me. She is an inspiration and my rock. She is my very own superwoman, and my best friend.

After my father passed away, Krishna (29) moved home from University, although going through her exam period she stayed strong, ambitious and slowly grew into my father’s role. She says I look exactly like my dad, especially when I fall asleep on his sofa! We built a strong bond together and we’re able to speak about EVERYTHING.

Janki (19), however, at the age of eleven, was the strongest of us all; she was my shoulder to cry on, but still my baby. She was so young but mature, which helped me a lot! That’s what made us become stronger and closer than ever.

We are a team who fight together! We get through our ups and downs, talk with each other, and have a laugh. I don’t know what I would do without my three angels. I love them very much! They are my life and help me run my story.

Thank you.

Patient Advice

Communication is key

Arti: Sometimes I go, “Oh that sounds fun”, but at the back of my mind I think, ‘oh I can’t do that’. I think communication is key when it comes to anything. If you don’t get your points across, that person you are with, or your friends, won’t know how you are feeling. They will make assumptions leading to miscommunication, causing your anxiety to kick in straightaway. You need to be able to say, “I want to do it, but I can’t do this – I actually physically cannot do it.” Just tell them how it is. Whether they understand or not, that is up to them, but we know where we stand.

My life with a neuromuscular condition in pictures

Arti with her mother and sisters
Arti at her graduation
Arti and her family with dad
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