IN LOVING MEMORY OF LORENZO
MAY 18, 2009 – JANUARY 25, 2024
We welcomed Lorenzo into the world in May, 2009. He was a perfect addition to our American/Italian family. Shortly after his birth we realized that Lorenzo was not thriving as his big sister did, and so began our year long search to discover why Lorenzo was not growing, reaching milestones and often sick with respiratory and digestive issues.
After traveling to countless specialists, Lorenzo was finally diagnosed in June of 2010 at “La Nostra Famiglia” hospital in Italy. His diagnosis was devastating; a rare genetic condition called MECP2 Duplication Syndrome. The symptoms and prognosis of this syndrome are heartbreaking with a shortened life expectancy. We were crushed.
We were told that there was not much information about MECP2 Duplication Syndrome. It was said that we should be prepared for the worst. Lorenzo would probably never walk or communicate and that he would be very ill.
With this in mind, we decided to pick up the pieces and give Lorenzo the opportunity to reach his potential, whatever that may be. With great support from his doctors and therapists, Lorenzo began intensive therapies. Lorenzo beat all odds against him in his progress. He began walking independently at the age of 5 years. He was non-verbal but was very expressive. He looked at you with a sparkle in his eye, took your hand and walked with you. He guided you to where he wanted to go and made you understand him, all without words. He was very smart and knew what he wanted. Lorenzo loved music and he danced to it, he enjoyed being with other children and he loved school. He loved his sister but if she tried to hug him, he pushed her away. He loved food and he would eat anything, he was always positive, he liked when people smiled at him, and he ignored people who ignored him. He brightened the darkest day with his smile, and he was a star in his sister’s eyes. Lorenzo’s body betrayed him, it did not allow him to communicate as he wished, and it prevented him from running on the playground with his classmates. Doctors were convinced that Lorenzo understood and had the ability to learn, but he was trapped in his body.
In the last years, Lorenzo developed epilepsy but kept fighting like the warrior he was. His life became more difficult, but he never gave up and he continued to travel the world with friends and family. His untimely passing came as a shock and was unexpected at the end of a beautiful day spent at school with his friends and after a joyful evening at home with his family.
The ability to help children with MECP2 Duplication Syndrome is within reach. The research currently underway is very promising and will be able to prevent children like Lorenzo from the onset of devastating seizures, illness, and premature death. The drug therapies being studied will restore children’s brain function, possibly restore their speech, and prevent dangerous respiratory infections. While we were not able to save Lorenzo, it is still our mission to obliterate MECP2 Duplication Syndrome (MDS). There are still many children that can be saved. Only with funding can we find a cure – therefore in lieu of flowers in honor of Lorenzo’s passing, please consider donating in support of MDS research in his name.
Lorenzo’s family
Suzi, Sofia and Alessandro
| Name | Donation Amount | Date |
|---|---|---|
| Saleem Farooqui | $100 | April 07, 2024 |
| Kelly Mundt | $250 | March 25, 2024 |
| Mickael Pouchon | $50 | March 19, 2024 |
| Alison Fuller | $100 | March 16, 2024 |
| Steelcase match | $400 | March 16, 2024 |
| Janet Veldhouse | $100 | March 07, 2024 |
| Michael Girke | $100 | March 06, 2024 |
| Philippe Mosbacher | $100 | March 04, 2024 |
| Kelly Henderson | $100 | February 19, 2024 |
| Sarah Hudson | $30 | February 17, 2024 |
| Sofia Centrone | $100 | February 12, 2024 |
| Meredith Coronato | $150 | February 12, 2024 |
| Viola e Giorgio Bresciani | $100 | February 12, 2024 |
| Viola e Giorgio Bresciani | $0 | February 12, 2024 |
| Moe Talal | $300 | February 12, 2024 |
| Michael Held | $100 | February 11, 2024 |
| Massimo Romano' | $50 | February 10, 2024 |
| Deniz Botkin | $250 | February 09, 2024 |
| HANIFA AYECHE BANNWARTH | $50 | February 08, 2024 |
| David Hay | $150 | February 07, 2024 |
| Sandra Osullivan | $200 | February 07, 2024 |
| Richard Yeates | $500 | February 06, 2024 |
| Sarah Jarvis | $100 | February 06, 2024 |
| Endres Jerome | $100 | February 06, 2024 |
| Valentina Fanni | $100 | February 05, 2024 |
| Alexandra Moldovan | $50 | February 05, 2024 |
| Chantal GIER | $100 | February 05, 2024 |
| Heike Hangebruch | $30 | February 05, 2024 |
| Andrea Kilin | $25 | February 05, 2024 |
| Terry Lenhardt | $500 | February 04, 2024 |
| Allyson Rhatigan | $100 | February 04, 2024 |
| Heike von der Heyden | $100 | February 04, 2024 |
| Gert Van Erum | $500 | February 04, 2024 |
| Steelcase Exeuctive Team | $500 | February 04, 2024 |
| Christian Gnam | $100 | February 03, 2024 |
| Michiel Butzelaar | $100 | February 02, 2024 |
| Maria Crișan | $50 | February 02, 2024 |
| Stepan Velensky | $30 | February 02, 2024 |
| Joel Benghiat | $150 | February 02, 2024 |
| Chris Krijthe | $20 | February 02, 2024 |
| Lars Schweizer | $30 | February 01, 2024 |
| Andreas Ulrich | $30 | February 01, 2024 |
| Carol Rowe | $300 | February 01, 2024 |
| Katharina Potts | $30 | February 01, 2024 |
| Reginella Castelli | $100 | February 01, 2024 |
| Daniela Marcuccio | $50 | February 01, 2024 |
| Kim Dabbs | $50 | February 01, 2024 |
| Anonymous | $50 | January 31, 2024 |
| David Sylvester | $100 | January 31, 2024 |
| Anthony Constable | $50 | January 31, 2024 |
| Marc Nicolaisen | $88 | January 31, 2024 |
| Turker Vardar | $50 | January 31, 2024 |
| Rachel Wilcox | $25 | January 30, 2024 |
| Penelope, Priscilla, Karen, Giacomo | $50 | January 30, 2024 |
| Samuel Janaud | $50 | January 30, 2024 |
| Page and Joe Plowman | $200 | January 30, 2024 |
| Charis Philippou | $50 | January 30, 2024 |
| Susan Conroy | $200 | January 30, 2024 |
| Ruth Howard | $100 | January 30, 2024 |
| Page and Joe Plowman | $0 | January 30, 2024 |
| Michelle Woods | $100 | January 30, 2024 |
| Meis Kadhem | $30 | January 30, 2024 |
| Meis Kadhem | $30 | January 30, 2024 |
| Angelina Züfle | $50 | January 30, 2024 |
| Valérie - Paloma - Álvaro - Teo | $100 | January 30, 2024 |
| Justin Van Roekel | $100 | January 30, 2024 |
| Anonymous | $200 | January 30, 2024 |
| HELENA SANCHEZ | $55 | January 30, 2024 |
| Michaela and Christian Neubauer | $100 | January 30, 2024 |
| Carlotta Pellegrini | $100 | January 30, 2024 |
| Joerg Mertins | $50 | January 30, 2024 |
| Sabine Fuchs | $100 | January 30, 2024 |
| Jeanne Christensen | $50 | January 30, 2024 |
| Isabel Hagspiel | $25 | January 30, 2024 |
| Katrin Mengel | $25 | January 30, 2024 |
| Stephane MAURER | $50 | January 30, 2024 |
| Anna and Johannes Inama | $150 | January 30, 2024 |
| Cornelia Pracht | $50 | January 30, 2024 |
| David Boehle | $100 | January 29, 2024 |
| Lee Kim Briffa | $50 | January 29, 2024 |
| Frederic Voss | $100 | January 29, 2024 |
| Aide Cedillo | $200 | January 29, 2024 |
| Silvia Wegmann | $50 | January 29, 2024 |
| Stefan Thielmann | $300 | January 29, 2024 |
| Laura Feinauer | $50 | January 29, 2024 |
| Lea Lorentz | $100 | January 29, 2024 |
| Gioacchino Cotugno | $50 | January 29, 2024 |
| Kenneth Dufford | $100 | January 29, 2024 |
| George Collins | $100 | January 29, 2024 |
| James O'Connor | $100 | January 29, 2024 |
| Nicole Koster | $300 | January 29, 2024 |
| Nicole Koster | $0 | January 29, 2024 |
| Marco Santos | $30 | January 29, 2024 |
| Anonymous | $25 | January 29, 2024 |
| Allison Windon | $250 | January 29, 2024 |
| Gloria Günzler | $40 | January 29, 2024 |
| Stephan Derr | $50 | January 29, 2024 |
| Liana Pena Rubia | $100 | January 29, 2024 |
| Madelyn Hankins | $100 | January 29, 2024 |
| Joelle Bataille | $30 | January 29, 2024 |
| Constance Legros | $50 | January 29, 2024 |
| Kerstin und Norbert Krischke | $100 | January 29, 2024 |
| Laurent Scherno | $50 | January 29, 2024 |
| Oscar Ahuja | $50 | January 29, 2024 |
| Florence LAMBLA | $20 | January 29, 2024 |
| Randa and Thomas Mack | $50 | January 29, 2024 |
| Maarten Dollevoet | $100 | January 29, 2024 |
| Joachim Mueller Wedekind | $50 | January 29, 2024 |
| Anna Forsen | $60 | January 29, 2024 |
| Anna Forsen | $40 | January 29, 2024 |
| Alessandro Sorcinelli | $100 | January 29, 2024 |
| Christian Rummel | $100 | January 29, 2024 |
| Jörg Richter | $100 | January 29, 2024 |
| Cristina Rus | $20 | January 29, 2024 |
| Anonymous | $15 | January 29, 2024 |
| Lizbeth O'SHAUGHNESSY | $500 | January 29, 2024 |
| Anonymous | $5 | January 29, 2024 |
| Sarah Stratman | $100 | January 29, 2024 |
| Allison Balus | $500 | January 29, 2024 |
| Giuseppe Cotugno | $1,000 | January 28, 2024 |
| Famiglia Cesaretti | $100 | January 28, 2024 |
| Stéphanie BLANCAN-CALLEN | $200 | January 28, 2024 |
| Ambra De nitto | $30 | January 28, 2024 |
| Elise TRELLU | $20 | January 28, 2024 |
| Alejandro Pocina | $100 | January 28, 2024 |
| Erika Seran | $200 | January 28, 2024 |
| Mario Marcuccio | $50 | January 28, 2024 |
| Silvia und Patrick Walter | $200 | January 28, 2024 |
| Elvira und Werner Krischke | $200 | January 28, 2024 |
| Barbara Vergari | $100 | January 28, 2024 |
| Donna Flynn | $250 | January 28, 2024 |
| Lulu Schuck | $50 | January 28, 2024 |
| Roberta Svanoletti | $100 | January 28, 2024 |
| Raffaella Marcuccio | $200 | January 28, 2024 |
| Olivier Lang | $50 | January 28, 2024 |
| Anonymous | $100 | January 28, 2024 |
| Veronika Halford | $100 | January 28, 2024 |
| Serena Borghero | $50 | January 28, 2024 |
| Gabriella Faggiano | $40 | January 28, 2024 |
| Monica Prati | $300 | January 28, 2024 |
| Anonymous | $100 | January 28, 2024 |
| Luminita Lapusan | $100 | January 28, 2024 |
| Emanuela Faggiano | $50 | January 28, 2024 |
| Lorenzo Pagani | $300 | January 28, 2024 |
| Susan von der Linde | $100 | January 28, 2024 |
| Loretta Falcone | $150 | January 28, 2024 |
| Susanne Hemke | $50 | January 28, 2024 |
| Jaclyn Hausler | $100 | January 27, 2024 |
| Erin Kintzle | $100 | January 27, 2024 |
| Connie Bateson | $200 | January 27, 2024 |
| FRANCESCO DE SANTIS | $100 | January 27, 2024 |
| Caroline and Charlie Huebner | $100 | January 27, 2024 |
| Sophie Adelman | $200 | January 27, 2024 |
| Anonymous | $100 | January 27, 2024 |
| Elide Santoro | $100 | January 27, 2024 |
| Anonymous | $50 | January 27, 2024 |
| Gale Moutrey | $100 | January 27, 2024 |
| Anonymous | $25 | January 27, 2024 |
| Elena Fortuna | $50 | January 27, 2024 |
| Nicole McGrath | $250 | January 27, 2024 |
| Lauren Brey-Knoblauch | $100 | January 27, 2024 |
| Julia Krause | $100 | January 27, 2024 |
| Brad Doan | $100 | January 27, 2024 |
| Daffnei Riedel | $50 | January 27, 2024 |
| Roland Meinzer | $100 | January 27, 2024 |
| Eric Valette | $100 | January 27, 2024 |
| Nicole Benzler | $100 | January 27, 2024 |
| Beatrice Monari-Abi Chahine | $50 | January 27, 2024 |
| Nadia Johnson | $30 | January 27, 2024 |
| Oscar Lopez | $50 | January 27, 2024 |
| Emily Brown | $200 | January 27, 2024 |
| Carlos Gonzalez | $50 | January 27, 2024 |
| Beau Barberis | $150 | January 27, 2024 |
| Timothy Thomas | $200 | January 27, 2024 |
| Deena Sami | $75 | January 27, 2024 |
| Florian Wendelstadt | $150 | January 27, 2024 |
| Adriana Rahn-Müssig | $100 | January 27, 2024 |
| Andrew Morris | $100 | January 27, 2024 |
| Elena de Kan | $50 | January 27, 2024 |
| Rachele Monfredi | $100 | January 27, 2024 |
| Anonymous | $100 | January 27, 2024 |
| Anonymous | $50 | January 27, 2024 |
| Silke & Ralf Schöddert/Krischke | $100 | January 27, 2024 |
| Anonymous | $50 | January 27, 2024 |
| Linda Johnston Rohrbasser | $100 | January 27, 2024 |
| Astrid Paudtke | $100 | January 27, 2024 |
| Sjoerd Jan Spiekhout | $150 | January 27, 2024 |
| Adela Petric | $50 | January 27, 2024 |
| Alicia Ries | $50 | January 27, 2024 |
| Cristina Cobarzan | $50 | January 27, 2024 |
| Teri Kearney | $50 | January 27, 2024 |
| Karla Zeitz | $100 | January 27, 2024 |
| Nathan Penney | $50 | January 27, 2024 |
| Katia Baeyens | $100 | January 27, 2024 |
| Angela Ullman | $100 | January 27, 2024 |
| Katia Baeyens | $0 | January 27, 2024 |
| Barb Fox | $25 | January 27, 2024 |
| Carol Anderson | $50 | January 27, 2024 |
| Nikki Maroni | $100 | January 27, 2024 |
| Carolyn Milligan | $50 | January 27, 2024 |
| Kathy Callahan | $25 | January 27, 2024 |
| Dena Mitchell | $200 | January 27, 2024 |
| Stephanie Bumgarner | $50 | January 27, 2024 |
| Amy Rossitto | $100 | January 27, 2024 |
| Shannon Smiley | $50 | January 27, 2024 |
| Joan Sabott | $100 | January 27, 2024 |
| Katie Henry | $500 | January 27, 2024 |
| Norah Pope | $100 | January 27, 2024 |
| Emily Ceccanti | $100 | January 27, 2024 |
| Malika Seran | $30 | January 27, 2024 |
| Robin Seran | $200 | January 27, 2024 |
| Anonymous | $50 | January 26, 2024 |
| Samantha Platz | $100 | January 26, 2024 |
| Mary Yount | $100 | January 26, 2024 |
| Wendy Heine | $50 | January 26, 2024 |
| Erin Bock | $50 | January 26, 2024 |
| Rachel Cole | $100 | January 26, 2024 |
| Sarah Chatt | $25 | January 26, 2024 |
| Robert Franksen | $100 | January 26, 2024 |
| Adria Csorgo | $200 | January 26, 2024 |
| Brian Carlin | $100 | January 26, 2024 |
| Anonymous | $50 | January 26, 2024 |
| Anonymous | $20 | January 26, 2024 |
| Bridget Kelly | $100 | January 26, 2024 |
| Susan Johannes | $100 | January 26, 2024 |