text: FRANKLIN, TN (WKRN) — A Middle Tennessee family is raising awareness about a rare genetic disorder called LCHAD. 
   
   It’s so rare that it only affects one in 100,000 children and one of them is a little boy from Franklin. 
   
   Just by looking at 2-year-old Owen Torti, you would never know he has special medical needs. 
   
   Owen has LCHAD, which means his body can not break down certain fats for energy. 
   
   “It can get pretty serious pretty fast, and what that means is he has to eat around the clock. He can’t go that far without eating a full meal,” Kayla Torti, Owen’s mother, told News 2. 
   
   If he goes without, his body begins breaking down muscle. 
   
   Kayla Torti and husband Tyler Torti said he must eat every hour and is fed through a stomach tube. 
   
   Owen was diagnosed with the disorder when he was just a week old. 
   
   When his parents looked for more information online, there wasn’t much available. 
   
   “When you find out your child has something you’ve never heard of before, you don’t know how to treat it, you also don’t know what it means long term… It can feel really lonely for parents initially,” Tyler Torti said. 
   
   The Torti family isn’t alone. People they don’t even know are rallying around them. 
   
   Two teams wearing shirts that said “All in for Owen” ran the Ragnar Relay through Tennessee to raise awareness for Owen and his metabolic disorder. 
   
   Runners raised $15,000 to help pay the boy’s medical bills. 
   
   Tyler Torti said the event made them feel loved, “like other people care.” 
   
   Kayla and Tyler Torti said they are both carriers of LCHAD and if they have more children, there is a 25 percent chance they’ll have the disorder as well. 
   
   The Torti family isn’t sure what the future will look like, but they are certain they want to get the word out. 
   
   “Our hope is that if somebody next year is diagnosed with LCHAD and the parents are online googling trying to figure out what this stuff is, they might find us and feel this sort of sense of peace. That hey, this family is doing it and maybe I can too,” Kayla and Tyler Torti told News 2. 
   
   The first LCHAD diagnosis wasn’t until the 1990’s. The oldest living person with the disorder the Torti’s have contacted is now 25. 
   
   LCHAD was added to the newborn screening just six years ago. 
   
   Click here to find out more. 
   
   This slideshow requires JavaScript. ||||| There is magic that happens when you do something together that could never be done a lone. Running 200ish miles from Chattanooga to Nashville, TN is not an impossible feat but it takes true teamwork. Joshua Collier and his team know what it takes to support each other, and this weekend at Ragnar Tennessee they are running for a very special cause. This is their story: 
   
   I run Ragnar for Owen Torti. Owen is just under the age of 2 and has a rare metabolic disorder- LCHAD. LCHAD is known as an orphan disease, which means no research or funding will be directed to finding a cure or long-term solution… unless light is shone on the disorder or a celebrity/organization steps in, raises awareness and leverages their platform (similar to the ALS ice-bucket challenge). 
   
   What started as a group of 12 individuals simply looking for team building through the Ragnar Run is slowly turning into a movement at our office. Our entire company of 500 is becoming “all in for owen.” Together we are raising awareness and directing others to www.allinforowen.com. We now have two Ragnar teams, instead of one, who will be running for Owen in the upcoming run in Chattanooga, TN (Oct. 23-24). And in addition to raising awareness we will be raising funds to help sustain and encourage Owen’s family and LCHAD families worldwide. The families, like Owen’s, are weary and need someone to hand the baton off too so they can rest, recharge, and then pick-up the baton again and run the next part of their leg. 
   
   So, “Why we run Ragnar?” 
   
   I…no… we…the team AllinforOwen runs Ragnar for Owen Torti. 
   
   We run because a group of 12 individuals has been transformed into a team. 
   
   We run because one team has turned into two Ragnar teams. 
   
   We run to raise awareness for a family whose son has a rare metabolic disorder. 
   
   We run to bring an orphan disease (LCHAD) into the light. 
   
   We run to connect families around the world, who are isolated by a disorder, to see that they are not alone. 
   
   We run to raise awareness for a family who refuses to give up. 
   
   We run to give HOPE to a family who is giving hope to others. 
   
   We run because the Ragnar race is not just an event but a model of how we should run with and spur each other on… on a day to day basis. 
   
   ||||| A Georgia family is hoping to raise awareness for their 23-month-old boy after he was diagnosed with a rare metabolic disorder that means he has to eat every hour to stay healthy. 
   
   Owen Torti was diagnosed with LCHAD (Long-chain 3-hydroxy acyl-coenzyme A dehydrogenase) when he was just a newborn, his mother, Kayla Torti, told ABC News. 
   
   The rare genetic disorder means Owen's body is unable to break down certain fatty acids into energy. As a result, he must eat nearly constantly or else his body would start to break down key muscles in the search for energy. 
   
   "If we had breakfast and skipped lunch [our body] would use up the energy from breakfast ... [to] break down stored fats for energy," Torti explained. "Owen’s body cannot do that. It breaks down his muscles and can cause problems with kidneys or liver or heart." 
   
   Despite the genetic illness, Owen still looks and acts much like any other toddler, Torti said. 
   
   "He wants to act like a normal 2-year-old and he wants to go and play and run around as long as the other 2-year-olds," Torti said. "Unfortunately, we have to have him sit down and take little breaks. ... He doesn’t know how to pace himself." 
   
   The National Institutes of Health does not have a firm estimate for how often the disease appears in the U.S. but says in Finland it appears in about 1 of every 62,000 births. Torti said she was told by her doctors that the condition can be related to a syndrome called HELLP syndrome, which can affect a pregnant woman's red blood cells, liver enzymes and platelets. 
   
   Since Owen needs to constantly be fed, he doesn't quite understand the purpose of a meal, Torti said. 
   
   "From feeding Owen so frequently, he has a lot of oral aversion to eating," Torti explained to ABC News. "Solid foods is so hard for him right now." 
   
   Torti said she is hopeful that as Owen grows, he'll be able have a fairly normal life as he learns what his limitations are. 
   
   There’s not a lot known about how this will affect him in future and what he will and won’t be able to do, Torti said. 
   
   "We’re hopeful that he can manage and he’ll know his body enough,” she said. ||||| Owen was born 9 weeks premature. At 7 days old Owen was diagnosed with LCHAD (Long-chain 3-hydroxy acyl-coenzyme A dehydrogenase) via the newborn screening. 
   
   LCHAD is a rare condition that prevents the body from converting certain fats to energy. 
   
   Because Owen’s body cannot break down fat, once his tiny storage of energy is depleted his body starts looking for other sources for energy. When it starts breaking down his muscles for energy, the slippery slope of a metabolic crisis has begun. 
   
   Owen has been hospitalized 12 times in 20 months – primarily due to metabolic crisis. During a metabolic crisis, he experiences muscle breakdown. If not treated, breathing problems, seizures, coma and sometimes even death can occur. 
   
   Owen is on a special medical formula called Lipistart. Owen has never been able to eat/drink much and now no longer eats or drinks anything by mouth. At 16 months Owen had a G-Tube placed to allow assistance with feeding him. 
   
   Owen needs to enter an intensive feeding program through Baylor in Dallas, TX 
   
   Money raised will help with: Past medical bills. Paying for formula that is not covered by insurance. The feeding program. 
   
   This has been a journey that Kayla and Tyler did not anticipate - filled with fear, tears, anger, questions, laughter, joy and much prayer. They have found strength in each other, in the amazing love and support from those who have followed Owen’s story, and in their faith. Owen’s name means “young warrior” and he is a fighter. We believe God has big plans for this precious little boy. 
   
   
   
   Below is more of their story through the eyes of Gammy... 
   
   
   
   I am “Gammy” to Owen; Mom to Kayla; and the “team mom” where I work. Three months ago, a couple of guys from my office decided they would like to participate in the 200 mile Ragnar Relay. Within a few days the idea turned into a team of 12 guys wanting to do more than run for the typical reasons of getting in shape and team building – they wanted to run for a bigger purpose. They decided to run for my 23 month old grandson Owen, who has a rare metabolic disorder called LCHAD. I was overwhelmed. When I called and told Kayla, we both cried and she said it was so amazing for them to run for Owen because this is something he would not be able to do because of LCHAD. 
   
   
   
   “All in for Owen” has truly become a team effort – my entire department and another running team from our office has joined. No words can express the depth of gratitude for all those who have given of their time and resources. Not only has the love of all those who have helped with this project brought strength to Kayla and Tyler, but our desire is that sharing their story will give hope to others who face unexpected challenges. 
   
   
   
   On November 15, 2013 life forever changed for Kayla and Tyler Torti. After two years of infertility, they were beyond thrilled to find out they were going to a have baby! At 31 weeks, Kayla realized that something was wrong and was told to go to the hospital. She was diagnosed with HELLP Syndrome which was caused from Owen’s disorder. The doctor explained that to protect Kayla from the possibility of having a stroke or her liver rupturing, they needed to quickly do a c-section. Within a few hours, Owen entered the world at 3 lbs.14 oz. and spent the next 39 days in the NICU. 
   
   
   
   Because of the Newborn Screening, within a few days of his birth, the doctor’s broke the news that Owen had LCHAD – an orphan disease that affects around 1 in 100,000 children. Even the medical community, other than the genetics team, knew very little about this disorder. So began a frightening, unknown journey of caring for a baby whose body could not break down long-chain fats and had to be fed every 3 hours around the clock to prevent his body from breaking down muscles for energy. 
   
   
   
   Owen is a happy, fun little boy. To look at Owen, you would never dream he is physically fragile and that in these past 23 months has had to be hospitalized 12 times. Normal things like teething, a growth spurt, a common cold, getting too hot, getting too cold – can all cause Owen to go into a metabolic crisis. One of the primary ways that the doctor monitors his condition is through a CK (Creatine Kinase) blood test. This test provides information to know the level of muscle break down which releases protein molecules and enzymes into the bloodstream and puts a lot of pressure on the kidneys. To put this in perspective: the CK level for an athlete who has run a triathalon will be around 20,000. Owen’s numbers have gone as high as 169,000. Owen’s normal level should be 50-150. When his CK numbers are high it creates a risk to his heart, kidneys, liver and other organs. A number of children who have LCHAD have lost their sight. 
   
   
   
   It is beyond difficult to watch Owen as he experiences a metabolic crisis. He loses muscle tone – including the ability to hold up his head. He often is too weak to even cry during these times. After each crisis, he regresses in walking because of the break down and weakness in his muscles. But through it all, he smiles. 
   
   
   
   Owen has always struggled not only with eating, but vomiting. Because his life and health depend on him eating, at 16 months old the decision was made that Owen would benefit from a G-tube. He continues to vomit daily and the eating aversion has become so severe he is now unable to eat or drink anything by mouth so all of his nutrition comes through the feeding tube. He is fed every hour through the G-tube during the day, and at night or naptime he is on continuous feed. 
   
   
   
   Through Baylor Health in Dallas, TX there is an inpatient feeding program that has a team of professionals (psychologist, occupational therapist, physical therapist, feeding therapist) that work with babies/children facing severe eating disorders. This program has seen amazing results. Although there is a waiting list, hopefully in January he will be accepted into the program. 
   
   
   
   With a grateful heart..... 
   
   LeeAnn (Gammy)
target: – To all the new parents struggling to feed their newborn every two to three hours, imagine having to do it every hour—for years. Such is reality for the Torti family in Tennessee, whose son, Owen, now 23 months, was diagnosed with the rare metabolic disorder LCHAD (long-chain 3-hydroxyacyl-coenzyme A dehydrogenase) as an infant. Because his body doesn't break down certain foods into energy, Owen is at risk of his body breaking down his muscles for energy if he goes without food for more than an hour, reports ABC News. "He wants to act like a normal 2-year-old and he wants to go and play and run around as long as the other 2-year-olds," mom Kayla Torti says. "Unfortunately, we have to have him sit down and take little breaks. He doesn't know how to pace himself." LCHAD, which was first diagnosed in the 1990s, is so rare it only affects one in every 100,000 newborns and wasn't even on newborn screening tests until six years ago, reports WKRN Nashville. To help with medical bills, two teams recently ran the Ragnar Relay through Tennessee wearing "All in for Owen" shirts and raised $15,000. Owen was born nine weeks premature, according to the family's YouCaring page, and has been hospitalized 12 times in 20 months, typically when a metabolic breakdown causes breathing problems and seizures. If not treated, he could slip into a coma and even die. With the constant eating, his mother says he's developed an oral aversion to food and is on a special medical formula called Lipistart, administered largely through a feeding tube. The Tortis have a 25% chance of having a second child with the same disorder. (These parents are losing both their sons to a rare brain disease.)