About the race
The third annual 5k Run for Love is Saturday, Sept. 10 at 9 a.m. at Tennessee Riverpark. Pre-registered runners are asked to be at the race location (4301 Amnicola Highway) at 8:30 a.m., with day-of registration available.To learn more or to sign up, visit lovewithoutreason.org. Registration costs $20.
Philip Mathews held a baby for one of the first times in his life this summer. The little girl was of no relation to him, but the introduction couldn't have been more profound.
"She was just like me," he recalled in wonder. "She had a cleft [lip and palate] like me."
Philip, who was born with Goldenhar syndrome, was born with a trench through the roof of his mouth and upper lip. Among the other challenges he faced related to his diagnosis, he required surgery to repair the separations. Through their journey with him, his parents, Susan and Santhosh Mathews, decided several years ago to create a nonprofit to provide surgeries for children with craniofacial deformities in developing countries.
Just a couple of years later, their nonprofit, Love Without Reason, has performed nearly 300 surgeries - such as the life-changing surgery for the little girl in India whom Philip, now a 16-year-old student at McCallie, was able to meet when he traveled there this summer.
Left nameless until after her surgery and called simply "Baby of Roopa," she was a shock to meet at first, Philip said.
"When I held her I just thought about what my parents must have thought when they first held me," he said. "And just thinking about that kind of made me shiver."
After all, said Philip, had he not been born in the United States, he could have met the same fate as the many children in developing countries who don't have the opportunity to have such a severe cleft fixed. A large number become beggars, vulnerable to traffickers and are at high risk for forced prostitution and organ harvesting, he said - a fate that Baby Girl Roopa will now never have to face.
"I don't know if they'd ever even heard the word 'surgery' before that," Philip said of her family. "Her parents were scared, but I showed them that I had been through it and that she was going to be transformed."
In order to continue to perform such surgeries across India and parts of Africa, Love Without Reason is holding its third annual 5k Run For Love Saturday, Sept. 10. Each surgery costs an estimated $500, said Susan Mathews.
"Sometimes, running an organization like this can wear you out, but listening to what [Philip] said made it worth it," Santhosh Mathews said. "[Philip] doesn't remember what he looked like, but seeing that little girl, that was tangible. It wasn't pictures, it was real life. The work we do - it's worth it all."
For the children who aren't lucky enough to be seen as early as Baby of Roopa (clefts typically need to be repaired by 15 months of age), the importance of the nonprofit's work is exemplified further, Susan Mathews said. And none were more severe than the case of 6-year-old Bhuvan, a little boy Philip met over the summer.
"His mother told me she was going to commit suicide," Philip said, adding that the mother had planned to do so with Bhuvan.
Such measures seem extreme, said Susan Mathews, but are not uncommon in developing countries, where a combination of minimal education, resources and understanding of such deformities, coupled with rampant cultural stigma and folklore, make living with such a condition extremely difficult and dangerous.
"In those rural areas without the education, it's a curse, or the mother is possessed. For us born and raised in America it's so hard to understand that stigma, but for them, they see it as 'Oh, it's on your face. You did something very bad to deserve or cause that,'" she explained, adding, "It's one more mouth to feed, but a mouth that will never be productive, one that will never be able to speak, much less work. [Bhuvan] was raised by society who mocked him to think 'Oh, I'm worthless. Why am I even here?'"
This summer, through Love Without Reason, doctors were able to close Bhuvan's cleft enough to allow the 6-year-old to speak for the first time in his life. Because of that, he can now get an education.
"He had been kicked out of school, made fun of - even by the teachers," Santhosh Mathews said. " And for $500, he can now speak for the rest of his life."
"It's amazing," Philip added. "And I think that's why I'm here, to be a voice for the voiceless, like [them]."
Email Gabrielle Chevalier at gchevalier@timesfreepress.com.