He can no longer see them, but 5-year-old Ely Bowman still has a love for whales.
His favorite movie is ‘Free Willy’, and he likes to make the splashing sound every time Willy jumps in the movie. One of his favorite toys is a whale that lights up and makes sounds. Ely likes to put the toy to his face so he can feel it.
And when his parents, Bekah and Northwest Nazarene track and field coach Danny Bowman, put a video of his favorite ride at Disneyland — Storybook Land — on their phones, he is mesmerized by the sound of the ride. After all, it does begin with a boat ride through the mouth of Monstro, the whale from ‘Pinocchio.’
“It’s probably one of the most boring rides at Disneyland, but it’s his absolute favorite because he’s obsessed with whales,” said Bekah.
Ely has lost his sight and language skills to Batten disease, a rare genetic disease that took the life of his older brother, Titus. The disease is fatal and has no known cure.
But the Bowmans have been determined to make the most of whatever time they have left with their youngest son, taking him to different places dependent on what functions he has left.
This past Christmas, for example, while Ely still had some of his sight left, they took him to see Christmas lights around the Treasure Valley nearly every other day. One of his favorite spots was in downtown Caldwell, where he could see the lights and listen to the “lalala,” or water, flowing in Indian Creek.
“I think any time we have, we try to do everything together,” Danny said. “We like to go on dates, but we take our kid with us for family date night. It’s not just Bekah and I, we spend time with Ely. We include him on everything we do, because you don’t know when it could be his last. Like Christmas, we go do that because that was the last time he’ll ever see Christmas lights.”
TITUS AND ELY
Danny and Bekah Bowman started dating while they were student-athletes at Northwest Nazarene. Bekah, a soccer player from Idaho Falls, had become friends with Danny’s twin sister — also named Bekah — while all three of them were working at a church camp the summer before Danny’s sophomore year and Bekah’s freshman year.
When Bekah arrived on campus that fall, she connected with the other Bekah, and started to get to know her future husband, a track and field athlete from Weiser, through her.
By that November they were dating.
They got married three years later, in 2005, and on May 25, 2010, they welcomed Titus into the world.
Titus, named after Danny’s great grandfather, liked to always be on the go.
“We always said he went 100 miles an hour,” Bekah said. “He was very energetic, very social. Quite the leader, just that kind of kid.”
Ely was born July 6, 2013. He got his name from Bekah, who was reading her Bible one morning when the name ‘Eli’ jumped out to her. Danny wasn’t initially on board with the name, but one day during the pregnancy, he texted her and asked “How’s Ely doing?”
Danny said he doesn’t know why he put the ‘y’ in the name other than “I’m not the greatest speller.” But Bekah agreed to give him the ‘y’ if he agreed to the name.
Ely quickly became the entertainer of the family, always doing whatever he could to make the family laugh.
“They were buds,” said Bekah. “They were attached at the hip, they got in trouble.”
It was a typical start for the family, which by 2014 was living in Illinois, where Danny was an assistant coach at Olivet Nazarene. But their entire lives changed one day in an instant, when Titus suffered a seizure while at preschool.
14 MONTHS OF UNCERTAINTY
Titus was 3 years old in February 2014 when his class was having ‘rug time.’ Titus kept laying down and teachers kept asking him to sit up. When he stopped listening, they went over to him and realized he was having a seizure.
First 911 was called. Then the Bowmans.
“It was scary because there was no reason for it, nothing to point to why it happened, it just came out of nowhere,” said Bekah. “And then in the days that followed, he kept having them. Nothing could explain it, no fever, no head trauma, nothing.”
The initial diagnosis was epilepsy. But the symptoms kept worsening. First they noticed vision problems. Then Titus’ muscles started weakening and he would collapse. On top of that, the seizures were getting more severe.
That summer, Danny took the head coaching job at Concordia-Irvine, a move he said was done more for family reasons than career reasons. More doctors in southern California gave the Bowmans more resources to figure out what was happening with their son.
“I think it just worked out where we had good doctors, a good school, we just had everything lined up,” Danny said. “It was perfect. I don’t think, if we hadn’t moved, we would have got a good diagnosis when we needed it. It was a good sequence of events.”
They did metabolic, genetic and neurology tests. The answer finally came from an epilepsy comprehensive panel test done in April 2015 — 14 months after Titus had his first seizure.
‘IT HITS AND THEY LOSE IT SO FAST’
The night before they got the news, Bekah took to the internet to see what types of diagnoses could possibly come from epilepsy comprehensive panel tests.
“I would read and go ‘oh that’s not us,’ and go to the next one,” she said. “I got to Batten, specifically CLN2, which is the type our boys have, and as I’m reading it, Titus is textbook. I’m like ‘that’s my son.’ So I said something to (Danny) the night before, and I was in tears and he’s going ‘we don’t know the answer yet, it’s not as bad as you think.’ So then when we got into the doctor’s office the next morning, the doctor said ‘he has this thing called Batten’ and I was like ‘I know what that is.’”
There are 14 types of Batten disease. CLN2 is a result of a lack of the TPP1 enzyme, which breaks down proteins and lipids in cells. Without TPP1, waste builds up in the cells and starts to damage them. Eventually the cells die.
When that happens, functions start becoming impaired.
Titus was diagnosed six weeks before his fifth birthday. By the time he turned 5, he could no longer walk.
“It’s tough, you think they’re normal and then it hits and they lose it so fast,” Danny said. “Titus lost almost everything in a month, month in a half. So it just hits you quickly and you don’t know what the next steps are, because it’s going so fast.”
Titus Bowman died on Sept. 17, 2016. He was 6 years old.
A GIFT FROM HIS BROTHER
Because Batten disease is genetic, both Danny and Bekah knew they were carriers. Titus’ diagnosis meant Ely had a 1 in 4 chance of having the disease.
Ely was diagnosed with Batten in June 2015, two months after his brother’s diagnosis. An early diagnosis proved to be beneficial.
“That was the gift Titus gave him,” Bekah said. “That early diagnosis and being able to treat him before the seizures started, before the walking problems started and all those things.”
When Titus was diagnosed, there was a treatment in its first stage of clinical trials. The Bowmans tried to get both their boys in, but Titus never got the chance. Ten days after Titus died, the second stage opened up and Ely was approved. The Bowmans flew to Ohio to start the trial. Bekah said Ely was the youngest person in the United States to get treatment.
“It just made the mourning process a lot longer than immediate,” Danny said. “We didn’t have a Titus celebration service until a month and a half after he passed. It just made things drawn out a little bit longer. But with the devastation, there was victory at the same time, because (Ely) was able to get accepted and get the treatment.”
Ely started getting treatment before any symptoms started showing, and as a result the effects of the disease have been slower to progress.
“Right now, if this was Titus, Titus would only have four months to live,” Danny said. “And he was in a completely vegetative state. As you can see, (Ely) is not. So it really helped getting treatment early.”
But there are symptoms still there. He has lost his sight and language ability. Part of Batten disease is cognitive, so dementia is often a part of it.
That led to some very tough days when Ely started losing his sight.
“It made him very angry, he would pound on his eyes and scream,” Bekah said. “That was heartbreaking. You want to comfort them and say ‘it’s okay,’ but it’s not okay. I just held him and I’m like ‘I am so sorry buddy. We’re going to figure this out, we’ll get through this.’ And he has. He’s totally figured out how to do life without his vision. He’s incredible.”
The treatment won’t save his life. It only helps the central nervous system, so everything outside of that is still getting attacked.
But it gives the Bowmans more time with their youngest son, and that in itself is a victory.
“This reality has formed all of our decisions,” Bekah said. “It’s why we moved here, because this is where family is. That’s something we didn’t get to have with Titus. We didn’t live near family, so they had to come visit us a lot.”
Danny was hired at his alma mater in September. His parents live in Nampa. Bekah’s parents just bought a house in the area, and will be moving from Idaho Falls this month.
THE SUPPORT OF THE COMMUNITY
One of the biggest blessings for the Bowmans over the past five years has been the support of every community they’ve been part of.
That hasn’t changed since moving back to Idaho.
“Concordia was great, and I feel NNU’s jumped on the same bandwagon,” Danny said. “From our athletic director, to president, to student athletes, it’s just been neat. I don’t know what word to use. And we don’t ask for it, they just do it. Whatever we can do to get Batten disease out there, and get support, and know what it’s about and realize we’re just normal people trying to live normal lives that got a curveball thrown at us. We’re just trying to live day by day.”
Ely’s currently enrolled in kindergarten at Silver Trail Elementary in Kuna, where the staff has set up a room for him with different textures hanging from the wall. Ely is able to go into that room, feel around and make discoveries. The Idaho School for the Deaf and Blind also comes in and provides recommendations on how to help Ely live life to the fullest.
But one of the biggest boosts for the Bowmans came from St. Luke’s, which set up a Batten treatment site just for Ely. He is the only child in Idaho getting treated for the disease, Danny says.
“That was one of our big things was if we’re going to live in Idaho, we need a treatment site in Idaho,” Bekah said. “We’re not going to travel. Dr. (John) Condie, the children’s neurologist at St. Luke’s Children, he stepped up to the plate. He didn’t even know our family, he just said ‘Yes, I’ll get a site set up.’”
Bekah has also taken to blogging about her experience. The title of the blog is ‘Can’t Steal My Joy,’ a nod to the joy she found through her faith, even while going through something much harder than she ever imagined she would.
“I realized joy is actually existing in brokenness and what it is for me is the presence of Jesus and the good God, that’s joy,” she said. “And knowing that we have this hope that can’t disappoint and there’s more to life than this temporary illness that we’re dealing with. Having the community surround us the way they did, the gifts we were given in little moments and understanding how to soak in where we were right then and there and not think about all this. There was just so many things that God gifted us to make me understand no matter what circumstances we have, we can have joy in them.”
The support of everyone around them has brought the Bowmans joy. But they also see joy as a two-way street.
“It’s not only we’re receiving, but we’re also giving back,” Danny said. “And the people are becoming Christ-like in everything they do to help serve the kids. But Titus and Ely are serving them as well, because I feel everyone needs a little joy in their lives and I think our boys give that a little bit. It’s hard to explain, because when I think of helping a handicapped individual before I got all this, I was like ‘I’m reserved. I don’t know if I can do this.’ But once you dive in, you get so filled with God’s love, I think, because they’re sweet innocent children.”