Patrick Girondi - Flight of the Rondone: High School Dropout VS Big Pharma: The Fight to Save My Sons Life

Copyright 2022, by Patrick Girondi

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10 9 8 7 6 5 4 3 2 1

Library of Congress Cataloging-in-Publication Data is available on file.

Front cover photo by Megan Euker

ISBN: 978-1-5107-7219-9

Ebook ISBN: 978-1-5107-7220-5

Printed in the United States of America

I have tried to recreate events, locales, and conversations from my memories of them. In order to maintain their anonymity, in some instances I have changed the names of individuals and places, I may have changed some identifying characteristics and details such as physical properties, occupations, and places of residence.

Dedications

I dedicate this book to my family members, the patientsmany who should have already been cured. Had I been shrewder, the project would have never been interrupted in 2010. I apologize and ask for their forgiveness. I will continue to push and ask for your prayers.

To my three sons.

To the courageous doctors and researchers:

Ballas

Cappellini

Cohen

Colavito

Crivelli

Galanello*

Gesualdo

Govender

Locatelli

Lucarelli

Luzzatto

Maggio

Moi

Montemurno

Park

Perrine

Persons*

Raino

Rivella

Rivire

Sadelain

Sorrentino*

Tisdale

Vullo*

Yannaki

Wiech

Wilber

To the families who have picked me, the rondone, up from the ground and thrown me in the air:

Feldman

Aliqu

Antypas

Arbor

Arcieri

Bailey

Bacall

Ballantyne

Barr

Beecroft

Bertucci

Borsellino

Botica

Bryant

Buccellato

Buckley

Burger

Capano

Caputo

Cashman

Catalanotto

Chambers

Ciaravino

Cirrottola

Clark

Colonna

Columbus

Coluzzi

Creanza

Crognale

Daly

DeFrancesco

Dever

Di Leo

Distasio

Euker

Ernsting

Ferro

Finkl

Finley

Fiore

Fratto

Fritzlen

Fulfer

Gavril

Girondi

Gorman

Gornick

Hanley

Hanson

Hayhurst

Herzig

Hillock

Holmes

Houlihan

Iacono

Johnson

Kazan

Kessler

Knox

Kurgan

Lackowitz

Ladhani

Lagiglio

Lapointe

Leonard

Liberti

Linconetti

Lockwood

Macchitelli

Marutzky

McCluskey

Meehan

Molaro

Napoli

OHara

OKeefe

Palenic

Pappas

Parillo

Pascello

Pepe

Petrosky

Pugliese

Remenick

Rubino

Salman

Schmidt

Segert

Segvich

Serritella

Shatkin

Sheehan

Shetty

Sion

Smith

Step

Sussmane

Swan

Tartaglia

Timm

Tito

VanHoutan

Vickrey

Walton

Wiech

Wilson

Thank you to these incredible journalists for sharing my companys story:

John Aquino, Bloomberg

Andrew Martin, Bloomberg

Dan OConnor, TrialSite News

Charles Ornstein, ProPublica

Andrew Pollack, New York Times

Katie Thomas, New York Times

Thanks to these museums/galleries that supported and displayed Megan Eukers work about my companys story:

International Museum of Surgical Science, Chicago

Linda Warren Projects, Chicago

University Club of Chicago

Thank you to the office of the New York Attorney General:

Letitia James; Amy Mcfarlane; Saami Zain

Thank you to my music collaborators, past and present:

Marco Abbattista

Massimo Allegretti

Renzo Arbore

Peppino Barberio

Ken Barnard/Street Factory Music

Mimmo Basetta

Antonio Benedetto

Salvatore Centoducati

Roberto Chietera

Giuseppe Chiefa

Michele Ciccimarra

Luca Debonis

Antonio Francia

Farelive

Ronny G. and the Ultimate Concept Band

Sergio Langella

Mino Lionetti

Enzo Matera

Giordano Mazzi

Enzo Melasi

Eustachio Montemurro

I Pooh

Antonio Sansone

Alessio Santoro

Arturo Sanzo

Giuliano Scavetta

Nanni Teot

Thanks to John and Patricia Moll for the cover shooting location at Moll Park, Tampa, Florida.

Thank you to Skyhorse Publishing and Tony Lyons for believing in and publishing this book and to Ted Kalem for making the connection with Skyhorse. Thanks to Julie Ganz for helping to pull it all together. Thanks to Kevin Anderson/Kevin Anderson editors, especially Erin McKnight and Rob Foreman. Thanks to Carl Segvich for assisting with edits. Thank you to my agent Megan Euker for her undying dedication and persistence.

... and many more...

*Rest in peace

Contents

Prologue

Put your hands in mine... close your eyes.

I took Santinos tiny hands into my own hands and observed him. Tired of playing? I asked.

He shook his head. I took stock of his condition as best I could through sight alone.

His forehead and cheekbones protrudedpushed outward by an overactive bone marrow that struggled to raise his blood levels. He was out of breath from running around with Nico and Enzo. Their hemoglobins were fourteen; his was nine.

Put your hands in mine, I said.

He did. We never questioned each other.

Close your eyes, I said as I squeezed Santinos hands, tighter and tighter, pausing for fifteen seconds. Figlio mio (my son), when I let go, youll be charged with energy from Pap. Youll be able to fly like the rondone.

I released his hands, easing the pressure slowly. We breathed. The aroma of Panificio Santa Chiaras wood-fired focaccia filled the piazza, where I sat, and Santino leaned against me with his eyes closed.

My solution wouldnt cure his Thalassemia. But it would let him go back to his friends.

He gazed at his freed hands. P, theyre tingling.

I nodded. Now go. Fly like a rondone!

Santino shot away. Pap! I can fly! I can fly!

There are no words for the happiness I felt as I watched him dart back into his worldPiazza Duomo, Altamura. He dodged in and out of the crowded square to rejoin his friends, his paisans, his compatriots.

Piazza Duomo is its own universe. Built in 1200, the stone cathedral has witnessed centuries of comings and goings across the white stone streets. Altamura, and all of Eastern Italy, was at one time a crossroad for African, Arab, Asian, and European cultures, and as a result, many Italians are a darker shade than their African relatives, and many Italians have bluer eyes than people on their northern borders. I find it tragically funny when seemingly intelligent folks identify cultures with Crayola colorsas if it were that simple.