About Branden
Everything Was Wonderful
When little Branden came into the world, he went straight to intensive care, but thankfully, he bounced back fast from a little breathing hiccup. The next months were like a dream with our happy baby and a joyful family. We were pumped about what lay ahead.
Then Something Wasn't Right
He was a cheerful little guy, always sporting a smile and a friendly demeanor, but maybe a tad too laid-back. He stayed mostly quiet, and when he did speak up, it was barely a whisper. Red flags went up when he couldn't lift his head or turn in bed as he should have. Despite attempts with physiotherapy, his motor skills hit a plateau and then started going backward.
Around his first birthday, he got hit with a grim diagnosis: a severe Type 1 spinal muscular atrophy (SMA), a progressive neurodegenerative condition. SMA, especially Type 1, is a brutal condition. Kids rapidly lose the ability to move or eat, eventually struggling to breathe on their own and relying on a ventilator. The prognosis was tough – a short life, increasingly paralyzed by SMA. To understand more about SMA, https://www.smacare.org/living-with-sma.
Dear Family & Friends...
As a family, we were shattered, grappling with the agony of constant losses, cycles of grief, and the looming specter of death. In those early years, there were moments when he was so sick, and we feared the worst.
Somehow, he kept pushing through each hurdle. But the harsh reality is that SMA is relentless, making life progressively tougher. Early on, we decided to pen a letter to our friends and family, pouring out our emotions and seeking help. Reflecting on that 2011 letter, what remains vivid even now is:
“His happy and positive nature gives us strength”
"We make it a point to enjoy every minute we have with Branden, and know that taking good care of him is the most important thing we can do for him and ourselves."
"We will definitely ensure that Jaden (his brother) continues to receive the love and support that he needs at his young age.”
“We cannot emphasize enough how important everyone has been for us, to help us overcome the many challenges we face coping with SMA.”
Confronted by adversity, Branden faces it with a positive attitude and smile.
What color does he dig the most, and what's the scoop behind it?
2nd chance in life!
Re-imagining better tomorrows
As long as Branden keeps up with his SMA treatment, things stay steady. But any pause in his treatment means a downhill slide that can't be reversed.
Despite the uncertainty, he's all about looking ahead. "Take away the past, don't dwell on it. Only think about the future," he insists (2022). His personality, creativity, and art encourage people to "be the very best," as he likes to put it.
Can you wrap your head around this? At the close of 2020, Branden's brother Jaden got hit with not one but two rare conditions – a pituitary tumor and Growth Hormone Deficiency. Read more here. We went through a tough year as the tumor grew, upping the stakes with risks like potential blindness. And to top it off, the whole ordeal got even trickier with the COVID-19 mess.
Luckily, after some twists and turns and the kindness of others, the tumor shrunk to a safer size. Since the end of 2021, Jaden's been injecting himself every night with growth hormone therapy. Yeah, the cost is steep, but it's not a lifelong deal.