We here at First and Lexington are all about finding ways to give back to our community and contributing to society as a whole. Tristan Chamberlain, his wife Tomomi, his 1-year-old son...his mother...brother and father for that matter...dang... Well all of them have been long time supporters of First and Lexington. Tristan's first and only son, Sora, just turned one recently. Grant had a chance to see his old friend and meet Tristan's son for the first time a couple weeks back and got to learn all about a rare genetic disorder Sora is battling throguh; Prader-Willi Syndrome. After learning more about Prader-Willi syndrome and fallign in-love with Sora, the gang here at First and Lexington decided to find a way to help aid in the research efforts for PWS. We are debuting, as a part of our 8th Spring line release, a special edition tee in Sora's honor. A portion of the procedes will be donated in his name to help fund Prader-Willi research. We caught up with tristan and asked him a few questions about Sora, PWS and the new shirt!
FNL: Hey Tristan can you tell us a little about your self?
TC: I'm a jack of all trades. I'm a personal trainer and I work for Apple. Back in the day I used to skate a lot but now I spend all my spare time running and training for OCR (Obsticle Course Racing) and endurance events. I'm also the father of an amazing little boy, Sora, and husband to my wife, Tomomi.
FNL: Your son was born with a rare gentic disorder; what is Prader-Willi Syndrome?
TC: PWS results from an abnormality of chromosome 15. Generally, people with this condition are missing the fathers matching chromosome, and as a result, the chomosome is defected. It's also very rare; between 1-15000 people are born with it, and my son was born with it.
FNL: How has it impacted your life and the life of your son?
TC: It's been a tough course. Sora has therapy 3-5 times a week. He has to be on a special diet and takes daily HGH (human growth hormone) shots.
FNL: What will PWS mean for Sora and your family long term?
TC: PWS is a monster of a condition. People born with it have both physical and mental delays and impairments. When they are just babies, they struggle to gain weight and grow. Then, one day the reverse happens. PWS affects a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including regulating hunger and satiety, body temperature, pain, sleep-wake balance, fluid balance, emotions, and fertility. Although hypothalamic dysfunction is believed to lead to the symptoms of PWS, it is not yet clear how the genetic abnormality causes hypothalamic dysfunction... "Sora will never feel full, he will always be hungry." It's like being a vampire, always hungry and never satisfied. He'll gain weight easily and we will have to lock all our food away so he doesn't eat himself to death.
FNL: First and Lexington is releasing a special edition Tee this spring to help raise money for research and awareness of PWS. Tell us about your involvement with the concepting of the inspiration for the design?
TC: Whenever anyone asks me how Sora is doing I always tell them that he is being a good little super hero; "he's breaking hearts and saving lives." It's kinda become our family slogan. People ask us, "how's your day?" and we reply "you know breaking hearts and saving lives." When the guys at F&L were working on a new season I jokingly said why not use our phrase on a tee and dedicate it to Sora, not ever expecting them too.
FNL: What does it mean to you, Tomomi and your son to have this shirt released in his honor and to raise funds for PWS research?
TC: It means the world to us. My son is 1/15000. No one really knows about his condition and we constantly need to tell people what it is. Raising awareness and contributing to a cure is everything to us.
FNL: Where can we learn more about PWS and how can people give more if they feel so compelled
TC: You can learn more here: Foundation for Prader-Willi Syndrome
Also, Matin Bialik, from Big Bang Theory, has a great video about PWS (click here).
FNL: Thanks for your time, man. Any last words or thoughts for us?
TC: I love my son more than life. He brings me great pride.