Two years ago on July 17, Tim and Marie Tobin said goodbye to their only child, a tragic loss for which the Beverly couple is still deeply grieving.
At the age of 19, anxiety and depression – symptoms often associated with Klinefelter Syndrome, the genetic disorder their son, Brendan, was diagnosed with at the age of 15 – and other circumstances, led Brendan to take his life. Now the Tobins want to make sure his death wasn’t in vain.
In 2016, Tim and Marie opened the Brendan Tobin Memorial Fund at Essex County Community Foundation – a $62 million grantmaking organization that serves the 34 cities and towns of Essex County – to support the creation of a clinic that would specialize in treating Klinefelter Syndrome, also known as 47, XXY. The Tobins are now in serious talks with a major Boston area hospital to create that clinic, and money raised by the Fund would support its operation.
“We desperately need a clinic in New England,” said Marie Tobin, who added that local families dealing with Klinefelter Syndrome travel as far as Denver and New York for specialized treatment.
Klinefelter Syndrome – a chromosomal disorder that occurs when a boy is born with one or more extra X chromosomes – is found in about 1/500 males, according to AXYS, the Association for X and Y Chromosome Variations. Generally not diagnosed until puberty or later (according to AXYS, only 30 percent of affected individuals are actually diagnosed during their lifetimes), it can cause a host of physical and emotional symptoms, which can vary widely from person to person. These include low muscle tone, infertility, hypogonadism, speech delay/expressive language disorder, mild autism, developmental delays, learning disabilities, attention deficits and depression and anxiety.
“It is a complex syndrome that needs more research, study and sharing of knowledge, and a clinic could help so many boys and their families,” said Marie. “What we want with the clinic is to give kids hope and help them get the answers and support they need to be healthier in mind and body.”
A local clinic, Marie added, would give Klinefelter patients a better understanding of their condition, and could help families to better cope with the social and mental health aspects of the disorder that are sometimes overlooked.
The clinic would also be a tribute to Brendan’s memory.
“Brendan was the kindest, most thoughtful son anyone could have ever had,” said Marie. “He had extra challenges due to complicating factors and circumstances. All the wrong things seemed to happen for him at the wrong time. But he is, and was, so loved. We are totally heartbroken. Losing a child is devastating under any circumstances, leaving a hole in our hearts that can’t be filled. We miss him terribly.”
Despite his challenges, Brendan, who was an avid sports fan, had hoped to pursue a career in physical therapy. He was also an eager volunteer with many local organizations.
“He instinctively liked to make people happy,” said Marie. “He was a very loved kid because he was kind.”
Through the creation of a clinic focused on Klinefelter Syndrome, the Tobins hope that they can help other young men like Brendan successfully manage their symptoms and lead happy, productive lives.
“Without a clinic in New England, kids will continue to suffer with challenges that they don’t understand,” said Marie. “We cannot bring our son back, yet so many could benefit from the help and expertise a clinic could bring. There is still a lot of misinformation out there and some physicians have little knowledge of Klinefelter Syndrome. But the newest research shows just how good life can be when the opportunity for treatment is available.”
If you would like to make a donation to the Brendan Tobin Memorial Fund, please visit www.eccf.org/funds and type “Brendan Tobin Memorial Fund” into the search field. To learn more about Brendan Tobin and Klinefelter Syndrome, please visit www.blueskiesrememberingbrendantobin.org.