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
– 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.)