Matt's Story

2007-02-01T15:07:00.000-06:00

Matthew Thomas Varagona (MTV)

Matthew Varagona was born on February 3, 1986 in St. Louis, MO to Sharon and Charles Varagona. He was born the youngest of three to Sharon and Charles (Buddy) Varagona. He was the younger brother of Sara and James (Jim).

Matt and Jim hamming it up

Throughout his childhood, Matt endured problems with Epilepsy, but eventually became seizure free through a combination of medications by the age of 9. He attended Union Nursery School and continued his primary education at St. Joan of Arc. At SJA, Matt was active in sports including volleyball, baseball, soccer, and basketball. His interests included video games, shooting hoops, and scoping out the latest sports cars. Matt attended SJA until the middle of his sixth grade year, when he transferred to Nottingham Middle School. While at Nottingham, Matthew continued his religious education through PSR classes provided by St. Mary Magdalen parish.

Matt, Jim, and Sara at Jim's high school graduation in May of 1999

Matthew turned 14 on Feb. 3, 2000. Five days later, he was admitted to PICU at St. Louis Children's Hospital. Matthew had been experiencing difficulty breathing and had been coughing up blood. Doctors at Children's were not sure of Matthew's diagnosis, but they did know his condition was serious. Immediately after his admission to Children's many tests were performed to determine a diagnosis. After a rough first night at the hospital, Matthew was intubated to help him breathe. He was kept in a chemically induced coma to allow machines to aid his lungs, heart, and kidneys in healing and functioning. Three days after admission, symptoms suggested Wegener's Granulomatosis. In order for treatment to be effective, he was kept in the coma and was unable to communicate with friends and family. The disease was in an advanced stage and Matthew's prognosis was not good. Family and friends stood by vigilantly for any sign of improvement each and everyday. During his stay, he received his acceptance letter to attend Bishop DuBourg High School, which he would never get to do.

On February 21, 2000, just thirteen days after Matthew had been admitted to the hospital, his battle with Wegener's was lost.

Devastated by this tragedy, anyone that had been touched by this special young man came together to mourn his death and celebrate the life he lived. As a tribute to the young and vibrant life that Matthew lived, friends and family came together for a benefit on March 30, 2001, with food, music, and memories to celebrate what he meant to us. We raised $19,000 in the hope that this young man's story will help raise awareness of this tragic disease and lead to progress in treating it.

Jim in saran wrap at the benefit in 2001

Those funds were given to the Vasculitis Foundation to put towards research. The foundation then created The Matthew Thomas Varagona Memorial Grant, which was applied to a study that investigated the susceptibility of genes to lead to Wegener's in family members of patients.

The faimly also hosted golf tournaments in 2001 and 2002 in memory of Matthew. Their efforts have raised over $25,000 for that research fund.

Since Matthew's death, we, as his family and friends, have worked tirelessly to raise awareness of Wegener's in the hope that other people will not suffer as Matt did or experience the terrible grief of losing a loved one. Sharon, our mother, has distributed hundreds of the WGA informational brochures and contacted the local media to educate them about the disease. She also wrote to President George Bush to share Matthew's story and ask him to support the Rare Diseases Act.

During what would have been his 21st year, I would like to focus on fundraising for more research and education through the Vasculitis Foundation.

We ask that you give what you can and to spread the word.

Thanks,

Jim Varagona

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