I love the smile on a child’s face and I yearn for that honest and carefree happiness. Unfortunately, it seems life decided to grant me something else; something less happy.

My name is Yakuta Moiyadi I am 23yrs old and I have the rare disease, Pompe. I was diagnosed in early March 2012.

I was born in India and I had a regular childhood, filled with pranks, secret signs with my sister, stayovers at my friend’s place and everything else a growing girl could have. I moved to New Zealand in 1999 and have been living here ever since.

As I grew older, my dreams changed from Power puff girls to art, reading, music and child care. Yes, despite opinions people might have about my future, I chose to enrol in a course for Early Childhood. I was good with children and I think I have a rather strong inner child (I cried while watching Pursuit of Happiness) so I valiantly ventured into Early Childhood and never regretted it one bit. People have always told me I have motherly instincts but I think I can simply relate to their nature. Everything, despite the ups and the steep downs, seemed to be on course, until I was diagnosed with Pompe’s disease.

What is Pompe’s disease? Well, it is a rather frightening way to watch the body refuse to perform the way it should. You see, this disease interferes with normal cell function. It begins to damage cells, resulting in muscle weakness that affects movement and breathing. I have been on a Bi-Pap machine for more than three years I would love to say that after all this time, I have gotten used to it. I secretly hope that one day I pick up my phone and record a video like people around the world battling diseases do. Seriously, I finally understand their courage. But I guess, instead of a video, I decided to do this.

I have decided to create this page because there is a medicine, let me be honest; there is no cure, but there is a way to treat the disease and keep it in check. A way where I can hope to do the things I want to. A way where I can work, study, travel or just curl up on the sofa and binge watch Modern Family. There is a way I can just be a regular person. And I don’t speak just for myself, I speak for people here in New Zealand suffering from the rare disease and watching their own body feel alien to them every day.

All I want is for this post to be noticed. The treatment required to provide the necessary care is not funded here in New Zealand. Without proper funding, I and other people in my position, are deprived of basic care and treatment. I want to raise awareness about this situation. I want the government to start funding the ONLY TREATMENT AVAILABLE – MYOZYME, like every other developed nation is doing.

I know people out there simply want to be present in the lives of their family and friends and I simply want us all to receive a chance at that, however slim that may be. I still yearn for that honest and carefree happiness but I am not naïve. I’ll take it in whatever dose I get.

Please petition for this cause and help raise awareness. You simply have to SHARE, like and help raise awareness.

Thank you

Yakuta