On the night of what was supposed to be his senior high school homecoming dance, Brennen Saele was instead rushed to the hospital unexpectedly as what was supposed to be a pivotal teen milestone turned tragic.
Saele had only recently discovered he was living with a rare genetic condition. His only symptom? A repeatedly disconnecting shoulder.
At age 15, Saele learned he had Vascular Ehlers-Danlos Syndrome, a “severe” type of genetic connective tissue disorder his mother had only recently learned she spent her life living with.
“I lived with this for 47 years, but I only found out about it two years ago. So I lived it for 45 years without even knowing I had it. Because of that, I had to get my boys tested, and unfortunately Brennan was the one who came up with it being positive,” Genesis Saele told NBC Chicago. “So he’s had it for 17 years, we only found about it when he was 15.”
The diagnosis meant the Lincoln-Way Central High School student had to drop out of football and other sports he enjoyed playing, but his resolve to live was stronger.
“He told me, us, one thing: that he wasn’t going to let this disease and disorder ruin his life,” his father Michael Saele said. “He was going to live his life to the fullest.”
He had been applying to colleges and planned to enjoy his final year of high school. That’s why he begged his mom not to take him to the hospital and let him attend his homecoming dance on Sept. 19.
“I don’t know if it’s mother’s intuition, but, he was just having pain in his upper right side that was kind of going into his back Saturday and something just told me to bring him in. And so I drove to Lurie’s because that was where his team of doctors were,” Genesis Saele said.
And she’s glad she did.
During his visit, doctors discovered Brennen had developed an aneurysm and it ruptured before his life could be saved.
“He just had scans eight months ago that were clear. He was due for more scans in May,” Genesis Saele said.
Even in his final moments, Saele was focused on others and looking forward to living longer.
“The whole time we were at the hospital with him, he was worried about his girlfriend and texting her and wanting to see pictures of her. She still got dressed up and took pictures, but then she didn’t go to the dance because their group was all going as couples and she didn’t want to go without him,” Genesis Saele said. “So she did she did take pictures, but the entire time he was bragging about her, showing the nurses and doctors pictures of her and talking about what he was going to do to make it up to her once he got out of the hospital.”
But he wouldn’t get that chance.
Brennen was later transferred to another hospital and things took a turn.
“By the time he was transferred, things just kind of took a turn and went way too fast. And unfortunately he passed 30 minutes after being transferred,” Genesis Saele said. “So I was the only one in the room with him when he passed. But then from that point forward is when everybody then made it up to the hospital and got there.”
Friends and classmates rushed from the dance to Brennen’s side to say their goodbyes.
“Everybody dropped everything, and the hospital was filled with just his friends, his different parents, all of our family. They were all there till two, three o’clock in the morning to say their goodbye on homecoming night,” Genesis Saele said.
In the moments since, Brennen was remembered for his selfless and loving nature.
“Once this happened, then it was the whole community putting red ribbons around, wearing red, you know, people waiting in line at his funeral for an hour to get into the wake and his high school having a theme every day for him because he was always the first one to be there for the football team in the student section,” Genesis Saele said.
Shirts reading “Live Like Brennen” are being sold to raise money for his family and celebrate his legacy. The community plans to wear the shirts during a football game Friday.
His family hopes Brennen’s story raises awareness for the rare condition he barely knew he had. HIs mother was diagnosed after her sister, a nurse, learned about the condition and encouraged her to get tested.
While there are many types of Ehlers-Danlos Syndrome, vascular is among the most severe.
“While extremely rare, it’s also especially severe. People with this subtype of EDS have very fragile arteries and internal organs,” the Cleveland Clinic reports.
The disease overall affects roughly one in every 5,000 people, but the vascular subtype is even rarer, impacting one in every 200,000 to 250,000 people.
“We’re prone to aneurysms, tearing, rupturing, bleeding disorders that we don’t know. You could sneeze too hard and it could rupture an artery, a vessel in your body, and not know it until it’s too late,” Genesis Saele said. “You could form aneurisms without knowing it… You have to be careful what you do. They don’t want your blood pressure to be too high. They don’t want your heart rate to be to high. They don’t want you doing anything that’s gonna jar the body because anything that would jar the body is potentially gonna tear something or rupture something that you may not know you have.”
In lieu of flowers at his funeral, the Saele family asked instead for donations in Brennen’s memory to The Marfan Foundation, which supports individuals and families affected by genetic conditions, including Vascular Ehlers-Danlos Syndrome.
“He was just caring individual. He loved to smile, loved to laugh, loved to just have fun and lived life to the fullest and he forgave, he forgot, he didn’t let things bother him and I think if more people lived like Brennen this world would be a much happier place and I think 17 years was too short for him,” Genesis Saele said. “I think he would have done a lot more in his lifetime. I think, he would’ve helped a lot of people. He would’ve spread the word out there.”
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