California Parents Treasure Every Moment with Their Two Sons Who Have Fatal Brain Disease 
 
 Team4Titus / Bowman Family 
 
 Team4Titus / Bowman Family 
 
 Team4Titus / Bowman Family 
 
 For Bekah and Danny Bowman of Orange County, California, summers used to be consumed with trying to keep up with their energetic sons Titus, 5, and Ely, 2, on the beach, at the park and on family vacations. Then a devastating diagnosis changed everything.This spring, both the couple's sons were diagnosed with late infantile-NCL, a form of Batten disease – an extremely rare and fatal neurodegenerative disorder for which there is no cure.Children with the Bowman's form of Batten disease, Late Infantile CLN2, face a dramatic decline followed by an early death.The process of succumbing to Batten includes blindness, seizures, personality and behavioral changes, dementia, the loss of motor skills and the ability to communicate, according to the Batten Disease Support and Research Association The disease has already taken hold of Titus and a genetic test has confirmed Ely will face the same fate. Now, the young parents are finding things to be grateful for every day, even as they watch their sons fade away.The Bowman's children were diagnosed with the deadly disease around the same time that Hollywood producer Gordon Gray and his wife Kristen received the diagnosis for their daughters Charlotte, 4, and Gwenyth, 2 In June, the Grays enlisted help from the Hollywood community to spread awareness and founded the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease in the hopes of raising the $10-12 million needed to fund research for a cure."Because of the rarity of this disease it doesn't get a lot of attention," Gordon told PEOPLE in June. "And because it doesn't get a lot of attention most of these doctors don't get a lot of funding. We made it our goal – 'Well, you guys do the research, we'll get the funding.' "Their efforts have given the Bowmans hope."The amount of publicity from the Grays has been a silver lining in the midst of tragedy," says Bekah, whose says the family was inspired to share their story after the Grays went public with theirs."I admire the Grays for all their hard work," says Bekah. "When you are living in the midst of Batten disease with your child it takes over all things normal, but even in the face of that, they have appeared, to me, relentless to raise funds and find a cure."When the couple began to notice their chatty son Titus's speech was lagging at around two years old, doctors told them to wait it out. Next, they noticed he was becoming clumsy.Then, in February of 2014, Titus began having seizures and was diagnosed with epilepsy – but that didn't account for all of his symptoms. When the young parents took their son to a psychologist, they were told he was likely intellectually disabled."We just felt so off about that," Bekah Bowman tells PEOPLE. "It felt so wrong, because we'd see our kid who was very smart and very up-to-speed, with the exception of a little speech delay."On April 7, all of the pieces came together – he was diagnosed with fatal and incurable Batten disease – beyond anything either parent could ever have imagined.Shortly after Bekah and Danny learned the name for what had been plaguing their son for years, they witnessed a rapid and unstoppable decline."When we got the diagnosis, [Titus] was still talking, walking and eating," Bekah tells PEOPLE. "Within a month of diagnosis he lost all of those abilities. He's blind, he cannot walk anymore, he's in a wheelchair, he's eating through a GJ tube and he doesn't talk anymore. We're just trying to figure out how to communicate with our son."Titus's form of Batten disease isn't just rapidly progressing, it's life-limiting. Children with this variation of the disorder face a life expectancy of 6 to 12 years.As Bekah and husband Danny put all of their energy into helping their older son enjoy his remaining days, a grim possibility loomed. Because Batten disease is an inherited genetic disorder, the fact that Titus had it meant there was a 25% chance Ely would as well.After having their younger son Ely tested in June, the Bowmans received the devastating news that he faced the same tragic fate as his brother."It was unbelievable," Bekah says. "My first thought was no, that can't be right. Re-test him, that can't be right.""It was just a shock obviously, because we thought he was fine," Danny adds. "I mean you don't think both of your kids are going to end up with the same syndrome."For now, as the parents try to help Titus through a daily struggle, they try not to think about what lies ahead."Titus has lots of seizures, lots of vomiting, every day we just kind of take the day as whatever we get, we don't think about the next one," Bekah says.The couple remains focused on helping their sons enjoy their lives as much as possible, as well as trying to feel thankful for every moment they have."When I'm willing to say, 'Thank you for...' suddenly I see the ugly become beautiful and I can make it another day," Bekah says."I couldn't have asked for a more loving, supportive, self-sacrificing family than ours to journey this with," Bekah adds. "I'm so thankful for this time they all have with our boys. These memories are precious."Even as they focus on creating new memories, the old ones of the boy they lost are difficult to escape."I think this is one of the areas that brings us the most pain when it comes to Batten Disease and what it's taken away from us," Bekah says."Living life next to Titus on a daily basis, listening to his belly laugh, watching the bundle of energy plow through the house (and through his brother), around the park, crash through the waves at the beach – it brought so much happiness. I miss that with all my heart and knowing Ely will follow in this ... It hurts." ||||| When Titus was born to Bekah and Danny Bowman, he seemed the perfect baby. He grew to be a busy, loud, playful, happy, loving toddler. Then, something changed. He stopped gaining new skills and he started having seizures. Bekah and Danny took him to numerous doctors to find out what was causing the seizures. Titus was diagnosed with epilepsy.They thought it was as bad as it could get for their young boy, but they were wrong. The seizures continued to increase in frequency and magnitude. Titus was hospitalized for a week at a time to get the seizures that were wreaking havoc on his young brain and body under control. A year later, the true severity of Titus's disease was discovered. This past April he was diagnosed with a rare genetic disease called late infantile NCL, also referred to as Batten disease.Danny and Bekah discovered that they both carried the recessive gene for this disease and that their younger son Ely had a 25% of having Batten disease as well. They had him tested and waited for the results. Their worst fears were realized when they were told Ely tested positive for the disease and would soon develop the same symptoms as his older brother Titus.Batten disease is progressive and fatal with no cure. This terrible disease will take both of these sweet boys away from their parents in the early years of their lives. Titus has already lost his sight, his ability to walk, talk, eat, support his own bodyweight, and do just about anything for himself.Friends of the Bowman family created this GoFundMe page. Our goal is to help them offset the mounting costs of care so that they can have some financial relief and focus their energies on loving their sweet boys and providing for their physical needs. If you would like to help, any amount $1.00 to $100.00, makes a difference. Your love, kindness and generosity in supporting this beautiful boy and his family are greatly appreciated.You can also show your support for Titus (and Ely) by liking their facebook page: https://www.facebook.com/Team4Titus 
 
 His gigantic smile says it all.... Titus loves his dragon Halloween costume!Titus' at an early hospital stay before his Batten Disease diagnosis.... his big blue eyes and persistent smile charmed his nurses :-)There were also the not-so-good days at the hospital. :-( ||||| As I read a bedtime story to my son tonight, I couldn’t keep back the tears. “Mama, what if I a were a slimy smelly sea creature with seaweed hanging from my body?” asks the boy in the book. And his mama assures him she would love him for exactly who he was, slimy, smelly seaweed and all. “I love you, my wonderful child,” she says. 
 
 A couple months ago I was thinking about love. How do we use love to help those around us truly fly, to be a part of God’s story the way He intends? As I was spending time just listening, God spoke this into my heart. “Love is… NOT holding someone to the impossible (and quite fake) standard of perfection that the world holds them to, while simultaneously championing them to be the very best version of themselves. In this you give that individual a chance to live authentically in who I (God) have created them to be.” I’ll be honest, at first I thought he was directing this to my heart because of how I needed to respond differently to my husband. And truthfully, I did need to hear it for that purpose but over the last few weeks and frankly, the last few days, this has taken on a whole new meaning for me and I believe God gave this to me so I could hold on to it now when I’ve felt the most broken than I’ve ever felt before. 
 
 A year ago I remember thinking I would surely break… snap at any moment. Danny and I were living in high alert mode as our son Titus had begun having seizures and wasn’t responding well to medication. Our youngest, Ely began having what the medical world called “ALTE’s”, apparent life threatening episodes. Ely would have such a forceful spit up that it would clog his nose and throat leaving him unable to breath or clear out on his own. Danny and I, countless times, suctioned him out, adrenaline pumping, working as fast as we could to save him from aspiration and ultimately, our worst fear… him dying. 
 
 Leading up to this most recent week, as we’ve faced health challenge after heath challenge, there was always something we could do to help our children. Ely had a 2 and 1/2 hour stomach surgery and has not had another dangerous episode again since. He was failure to thrive and had a feeding tube put in. He’s now gaining and actually finding himself the on the growth chart. We’ve faithfully given Titus every medication the drs prescribed to successfully control his asthma and allergies and have diligently searched for answers to his seizures and what we could do, radical or traditional, to help him. We sought out every therapy and assessment we were told or felt he needed and diligently got him on an IEP, all with promises that this was just a difficult season and we would see improvement with time. 
 
 Our search for answers ended this week, Tuesday at 11:45 am to be exact. And we are left with the ability to do only one thing… Love. Titus was diagnosed with a rare genetic disease called late infantile NCL. It is progressive and fatal with no cure. This disease will take our sweet boy away before he can experience being a teenager. 
 
 
 
 There isn’t anything we can do to reverse the bad genes, to heal him. Appointment after appointment this week confirmed the diagnosis. And I’m left feeling desperate, helpless, sad… so so sad. And I find myself saying to Titus over and over again, “I love you.” 
 
 And God has been speaking to me in my deep brokenness of an even deeper love. A love that enables Titus to be all that he was meant to be despite the obvious imperfections we see in this world. And I want to champion that. I want to love my son like that. 
 
 This week I’ve become broken. More broken than I knew I could be. So broken that I can’t fix it and I’m overcome by it. 
 
 But… out of the broken comes love. An authentic, new eye-opening kind of love. 
 
 His big smile lights up a room 
 
 The three most precious gifts God has given me 
 
 Our silly clown who adores his big brother 
 
 Gramma loving on these two 
 
 Making silly faces at each other and sharing laughter that comes from deep within 
 
 Oh how I love and am loved. 
 
 Thanks for listening… And keep praying. 
 
 Bekah ||||| In his long career as a film producer, Gordon Gray is best known for making inspirational fact-based sports movies about subjects who overcame long odds, from baseball pitcher Jim Morris in The Rookie to football player Vince Papale in Invincible, to the gold medal-winning U.S. Olympic hockey team in Miracle. After Gray and his wife Kristen learned in March that both their 4-year-old daughter Charlotte and 20-month-old daughter Gwenyth have the incredibly rare and potentially fatal degenerative brain disorder Batten disease, it is Gray who is up against the odds and in need of a miracle. 
 
 After they received a nightmarish medical diagnosis in March, the Grays were told so few suffer from the disease — maybe 10 at any given time in the world — that there has been limited research towards a cure even though the disease was first discovered in 1903. At present, there is no hope to stop Gray’s daughters from progressively losing their sight, followed by their motor skills and ability to feed themselves. Most children with Late Infantile NCL Batten Disease CLN6 die between the ages of 6 and 12. The Grays sought counsel and support from a core group of Hollywood friends, and together they formed a plan to fight back. They formed The Charlotte And Gwenyth Gray Foundation. 
 
 The foundation is taking to Facebook to help them raise the $10 million-$12 million needed to fund urgent medical research they hope will arrest and cure the disease. It will take an initial $2 million to launch the trials necessary to prove the treatments will work, and the rest of the funding will see it through. The following stars are making fundraising appeal on their Facebook pages: Rihanna, Dwayne Johnson, Megan Fox, Mark Wahlberg, Channing Tatum, Jenna Dewan Tatum, Seth MacFarlane, Jennifer Garner, Jon Hamm, Jessica Alba, Eva Longoria, Jessica Biel, Ali Larter, Darius Rucker, the musician Juanes, Walking Dead star Norman Reedus, Julianne Hough, Brooke Burke, Molly Sims, U.S. women’s soccer star Alex Morgan, basketball player Jason Collins, and NFL quarterback Andrew Luck. Many of them will post on Twitter and Instagram, as well. 
 
 Each plea will ask followers to donate $1, with the idea that the money could add up quickly. Rihanna has 94 million followers, and The Rock and Megan Fox each have 50 million followers. If 5% of Rihanna’s followers accepted the challenge, that would raise $4.5 million and they would be almost halfway there toward giving Gray’s daughters a fighting chance. 
 
 The short video that each celeb will post tells a heartbreaking story that is any parent’s worst nightmare, and you can view it here. 
 
 Charlotte was just like any normal little girl, a smile machine who is tall for her age, graceful, sociable and an exceptional athlete. At 2 1/2 years old, she began having trouble finding the words to convey her thoughts, which led to a speech therapist who assured her parents she would grow out of it. Shortly after, her coordination began to subtly diminish, along with her interest in playing sports. Charlotte was then diagnosed with autism, which didn’t ring right with her parents. Last Christmas Eve, she tripped over a present and her arm shook when she regained her footing. Shortly after, a dose of Tamiflu led to convulsions. Again, doctors told them not to worry. Fortunately, they captured the convulsions on an iPhone, which led to an EEG that showed the first signs of abnormal brain activity. An MRI followed, along with another diagnosis, this time Leukodystrophy, which is the degeneration of white matter in the brain. A gene sequencing procedure followed, and then in March, a geneticist at UCLA finally had a handle on why Charlotte was changing. 
 
 “I was there with my wife, and the meeting went something like this,” Gray recalled. “He told us, ‘Your daughter has Batten disease, it’s incredibly rare, it is fatal. And there is no cure. They’d found another person afflicted by this variation of the disease in India, so the diagnosis was confirmed. I asked if there was anything else he wanted to say to me, and he handed me some brochures.” 
 
 The Grays by now had been reading voraciously about all of the previous diagnoses, and before leaving, they had one other question. “I’d read with inherited disorders, there could be a 25% chance of a sibling having the same disease, and I asked about my daughter Gwenyth, and we scheduled a blood test,” Gray said. “I got the news on Charlotte on March 2, and then a week later we were told that Gwen had it, too.” 
 
 The condition is so rare that there aren’t even any Batten specialists in California. Gray’s research into Leukodystrophy led to a Duke University doctor who’d done a bone marrow transplant that helped. Gray saw that as a sign and it launched him on a quest, if only to be able to do something. 
 
 “I was in shock from the moment I got the news, and I felt like if I kept moving and digging and fighting, I wouldn’t lose my mind,” Gray said. He scoured the globe for any encouraging signs. A frat brother who became a venture capitalist with biotech investments led him from one researcher to another and finally to a researcher working in New Zealand with a “vector virus” similar to Batten that cured one of six sheep in the study. “He was looking for greater efficacy so he can ultimately move into human trials,” Gray said. “I asked, ‘What can we do to give my daughters a shot and he said he was two to three years away at best and what I needed to do is prepare my house for wheelchairs and blindness. ‘There is really nothing I can do for your daughters at the moment.’ ” 
 
 Unbowed, Gray asked if money might accelerate the process. He was told it would. “He said, ‘I have something here that I believe will be a cure, but there’s no funding for it right now. Nothing. You would have to personally fund the research, the trials, everything, including the surgery.’ I said, ‘OK. I’m a film producer, and everyone assumes when they read the grosses that I’m keeping every dollar, and in that sense it helped because doctors were paying attention when I said that I was going to find the money to progress and accelerate this research.” 
 
 By now, Gray had shared his story with a core group of fellow producers and execs, many of whom are also parents of young children. A steering committee was formed including Scott Stuber, Neal Moritz, Jason Blum, Sean Bailey, Mark Vahradian, Lorenzo di Bonaventura, Basil Iwanyk, Beau Flynn and Jim Whitaker. They meet each week to hatch fundraising plans. Contacts at Facebook made possible this first fundraising foray, and a growing group of stars agreed to use their reach to get the Grays the substantial money needed to give them a chance in this ticking clock race. There are no guarantees for the girls, but three potential treatments would be verified over a six-month treatment, a gene therapy/vector virus that was successfully tested on one animal model; stem cell therapy; and small molecule therapy. 
 
 Deadline isn’t a fundraising tool, though I did write about Karen Black and her husband’s crowdfunding effort for an experimental treatment for the cancer that would claim her life, because their desperate attempt felt brave. While Gray was describing his effort to stave off a death sentence for his daughters, an electronic picture frame on my desk shuffled photos of my own kids as they grew. This is a great business to cover and to work in, but once you become a parent, it is a job and nothing else really matters but your kids. Most parents would be helpless, facing such a cruel diagnosis as was given the Grays in March. It is impossible not to root for any parent who refuses to take no for an answer, particularly when they are fortunate enough to be in a position to raise what seems like such a large amount of money, and when it seems there is a real chance it might work. Beyond the Batten treatments, the foundation will endeavor to raise money for other childhood afflictions, but right now the priority is clearly on Batten. 
 
 Given his producing resume, it’s not surprising that Gray likens this attempt to a famous sports comeback. 
 
 “When I explain to people, I talk about Doug Flutie and Boston College and that Hail Mary pass in the Cotton Bowl,” Gray told me. “What I’m trying to buy right now is three Hail Mary passes before I run out of time. I don’t think I will, because I have a doctor who thinks we can move quickly enough to save my girls. And If we save the girls, and I don’t want to sound reckless, but we’ve potentially cured this disease.”
– Batten disease, a rare and fatal genetic brain disease marked by blindness, seizures, dementia, and loss of motor skills, gained attention earlier this year when Hollywood producer Gordon Gray and his wife Kristen learned that both their young daughters have it, reported Deadline in June. Now another California couple, Bekah and Danny Bowman of Orange County, have learned that not just their 5-year-old son Titus but also their 2-year-old son Ely have the disease, reports People. "The amount of publicity from the Grays has been a silver lining in the midst of tragedy," says Bekah, noting that they decided to share their story after watching the Grays, who are trying to raise $10 million to $12 million in a race to help find a cure, go public with their own struggle. Worries about speech and mobility issues and seizures led to Titus' diagnosis in April. Because the disease is genetic, there was a 25% chance his little brother would have it. Ely took a test in June, and the family's worst fears were confirmed. Both boys have late-infantile CLN2 and will face dramatic declines before dying young. Titus is already suffering the effects. "When we got the diagnosis, [Titus] was still talking, walking and eating," Bekah says. "Within a month ... he lost all of those abilities. He's blind, he cannot walk anymore, he's in a wheelchair, he's eating through a GJ tube and he doesn't talk anymore." Still, the Bowmans are finding a way to be thankful for every day they have with their boys. Bekah had this to say in an April blog post: "This week I’ve become broken. More broken than I knew I could be. So broken that I can’t fix it and I’m overcome by it. But ... out of the broken comes love. An authentic, new eye-opening kind of love." A GoFundMe campaign has been started for the family. (This rare disease could turn this boy into a mannequin.)