The Disco Ball

Collaborate with us on a backstory for Azeglio Manzella by chronicling his upbringing and how channeled life with a blind father into a passion for space exploration and research.

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Co/Create: Azeglio Manzella Backstory

Azeglio Manzella Backstory

At a point in the future when the crew are back on the ground…. Somewhere.

Az voiceover: Alma had asked to meet up with me. She said that she wanted to check in just to make sure that I was ok. I had a lot on my mind. I was not sleeping well. I was worried, very worried. I had become anxious and the black dog had been visiting me more and more often. Depression was taking hold. I was not sure what Alma could do but she was a great leader in space. Talking to someone would surely help. We had arranged to meet in a nearby cafe.

Quiet cafe in {location to be determined depending on where in the story they are}

Alma: Az, thanks for agreeing to meet with me. I have been concerned about you.

Az: I’m “ok”, like all of us.

Az voiceover: I knew that I was lying by saying I was ok. It was the same type of instinctive response we all make when asked how we are.

Alma: I want to ask you something important. I won’t beat around the bush; I will just ask. Answer however you see fit.

Az voiceover: Alma leaned forward and looked me in the eyes.

Alma: Just before the abortive EVA, before the flash and everything, your experiment failed. Twice. You took that really really hard. You’re a scientist, a world renowned scientist, you know that experiments fail all the time. Why did you react so badly this time? Is there something that you are hiding from us?

Az voiceover: I took a deep breath and before I could speak a server interrupted.

Server: Welcome to Fundamental. I am Becky and I will be your server today. Can I start you two off with some coffee.

Alma: Just a coffee, black no sugar.

Server: Anything to eat?

Alma: No thanks, I’m good.

Server: What about you sir?

Az voiceover: I was deep in thought and didn’t hear what was said. Alma’s question had triggered me.

Sever: Sir?

Alma: Hey Az, come back to earth from wherever you are.

Az voiceover: The “come back to earth” statement from Alma startled me. It brought me back to the present.

Az: Oh, sorry, um yeah, I’ll have the same.

Az voiceover: I was not sure what I had just ordered.

Alma: Come on Az whatever it is, talk about it. I won’t share it with anyone unless it can help us all.

Az voiceover: I had to trust Alma, she was my only hope of someone understanding. She had kids as well, she would do anything for them, she might understand my pain.

Az spoke slowly and deliberately.

Az: It had nothing to do with whatever happened to us. It had to do with my father, my sons and myself.

Az voiceover: Sensing that I was about to say something deeply personal, Alma sat upright and back in her seat. Her face softened and a look of concern crept over her.

Alma: Feel free to talk, any secret will be safe with me.

Az: NASA is aware of my father’s blindness and my research, so it is not so much a secret; but a massive disappointment. Actually more than a disappointment. A tragedy unfolding in and before my eyes.

Let me give you some idea about what has happened. I was born on Murano, an island near Venice famous for Glass products. When I was two years old the family moved to Naples where I grew up. My father was a Master Craftsman. World famous for his glass creations. From his workshop beside our house, he created chandeliers and ornate glassware that now adorn the Castles of Royalty and the homes of the Rich and Famous all over the world. He worked with his hands and his eyes. When he lost his sight he lost more than his livelihood, he lost his reason for being. He could no longer work at the craft that he loved.

Not a lot was known about degenerative eye diseases in those days however his vision started blurring at 45. He was blind by the time he was 50. At the time of the onset of his vision problems I was at University in Milan studying my BSc in Biological Sciences. As his only son, I made it my goal to determine the cause of his blindness and if I could, find a cure. Milan had a world leading program in Regenerative Medicine. As soon as I graduated with my BSc, I immediately enrolled in my Masters. My research progressed and I moved to the US, to Stanford to complete my PHD. I am or was, still there conducting research.

Az voiceover: From the look on her face, Alma could see that I was emotionally impacted by my father’s situation.

Alma: You’re definitely the world’s leading authority on eye disease.

Az: Thank you.

Az voiceover: I took a deep breath and continued.

Az: In 2006 a Japanese Professor by the name of Shinya Yamanaka discovered that adult cells could be repurposed into stem cells that would then regrow into cells of any type. This breakthrough was vital for my research in curing optic diseases. On the ISS I was specifically trying to grow new retinal cells in zero gravity from my own stem cells but without the genetic abnormalities. I had modified the genes in the stem cells to remove that abnormality. The use of stem cells in this way is revolutionary. It provided hope for my research to find a cure to my father’s blindness.

My father had inherited a degenerative eye disease which is now called ‘retinitis pigmentosa”. It causes a gradual loss of vision due to degeneration of the retina. Degeneration usually commences between 45 and 50. Unfortunately, I have the same genetic disease, as do both my sons.

Alma: I am so sorry.

Az: I am now 40 years old and don’t have much time to find a cure for my father. He is 65 and unless we find a cure before he is 70, it will be too late. Too late for him, too late for me and my sons’ fate will be left to others. Most of all, I need to find a cure for my sons.

Az voiceover: Alma sat silently. She appeared uncertain of what to say.

Az: Sometimes Astronauts encounter a condition called Space-Associated Neuro-Ocular Syndrome or SANS. The main symptom is blurry vision. Nobody knows exactly what causes it.

Az stops. Alma breaks the silence.

Alma: Yes, I am aware, I had some mild blurriness upon arrival at the ISS, but it went away. Nearly all of us did.

Az: Yes, (long pause) but mine did not.

Az voiceover: Alma fell silent, I could see that she knew the implication of what I had just said.

After a short pause, Az spoke slowly.

Az: I do not know if I have lingering SANS or if my eventual blindness has started. The two failed experiments were my best hope to regrow stem cells to, in layman’s terms, to restore sight. For my sons it would mean an end to the worry of possible future blindness, to my father it would mean restoring at least some of his sight so that he could finally see his grandsons. For me it would have meant that I fulfilled my promise to my mother. Just after my father went blind, she passed away as the result of a motor vehicle accident. On her deathbed I promised to look after him always and if at all possible, to restore his sight.

Az voiceover: I could see a tear run down Alma’s cheek.

Alma: Where is your father now?

Az: He came with me to the US when I moved to Stanford. He is living with my family in Redwood City. At least that is where he was.

Fade to the next scene.