Tiny Warriors - Blaise {Houston, Texas Child Photographer}
Meet Blaise
Look at those squishy cheeks and rolls! He was six days new here!
He was born January 7th, 2020 just an ounce shy of 10 pounds! Our chunky, healthy, beautiful little boy. Cody and I being brand new parents were in total awe of him from day one. We went home and soaked up every second, every cuddle, every feed, every bath. To us, he was perfect.
Then came the early signs. I remember both my parents asking “why does he breathe like that?” By that, they meant the belly breathing, the retractions, the labored breathing. One of the early tell tell signs. We played it off as “he’s just an excited baby boy!” And then came the tone. You see, Blaise wasn’t always weak. That’s what this disease does, it robs you & it typically robs you quick. We would notice when we picked him up his arms and legs would just fall. And tummy time? He hated it. He’d lay there and cry and was not able to lift or turn his head even slightly. It was about 6 weeks in, we started to worry something was off. Everyone kept playing it off as “he’s just a little behind, every baby hits their milestones differently.” But it was his 2 month check up that confirmed our fears. “Hypotonia” they would tell us (an abnormally low level of muscle tone.) But with hypotonia there is almost always an underlying condition. So we were referred to therapies (physical and occupational therapies) and neurology.
Of course all this started happening during a pandemic. So the soonest neurology appointment wouldn’t be until the middle of JUNE. I ended up joining a hypotonia Facebook support group to help cope and learn how to care for him better. And after posting an introduction of Blaise, describing a few things going on with him and a picture I received a message from a concerned mom/nurse. She told me she feared Blaise might have the same disease her daughter had, and encouraged me to see neurology as soon as possible. She told me time was of essence.
SMA.
Spinal Muscular Atrophy. This was the disease she warned me not to google. Why? Because the first thing google will tell you is your child will pass away by the age of 2. Gut wrenched I kept reading and realized Blaise checked every box of symptoms. So with that I called neurology and cried and begged to be seen that week. The very next day we met with his neurologist and within 5 minutes she knew. I remember zoning out as she told me she was almost certain he had this awful disease. So after an expedited test the news was confirmed on April 14th.
Type 1 SMA.
What is SMA? Spinal muscular atrophy is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number ONE genetic cause of death for infants. SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and sometimes fatal muscle weakness.
I can’t begin to describe the feelings we felt from diagnosis. To us Blaise was (and still is) perfect. We couldn’t believe he was going to be taken away from us by this progressive genetic disease. BUT there was hope. Hope that wasn’t there for families just years ago. There were at the time TWO (now three) treatments available to help individuals with SMA out. We didn’t even have time to process the diagnosis before we started down the craziest journey of our lives. Our medical team and Cody and I decided to pursue a treatment called Zolgensma. Zolgensma is one of a kind gene therapy. It essentially goes in and “replaces” the missing or mutated SMN1 gene. It’s the worlds most expensive drug on the market, costing roughly 2.1 MILLION dollars. And two weeks later with help of our AMAZING medical team Blaise was being treated. It was a ONE time IV infusion treatment that only lasted about an hour. A day we will never ever forget. Our million dollar baby.
Installing Muscles!
Zolgensma infusion day!
Only days later we started seeing changes. We started noticing him moving his head from left to right. What may seem like such a little thing to most parents was ground breaking to us. It was the first sign to us that this treatment was working.
Now there’s been some bumps in the road. There’s been multiple hospital stays. One where Blaise ended up needing to have a gtube placed because he lost his ability to eat orally. His muscles used to swallow were just too weak. But he’s been THRIVING and gaining weight ever since. He now does physical therapy every day, and multiple other therapies throughout the week. He sees a number of specialists to stay on top of his care. He sleeps on a bi-pap machine to give him a break because just breathing takes so much out of our SMA babies since those muscles are also weaker. We do an extensive round of breathing treatments and cough assist on him twice a day. But all of these things have only made him stronger!
This boy is an inspiration. He is hands down the happiest baby we’ve ever been around, you’d never know all the things he’s been through in just 7 months.
But we decided to share our story rather then keep it private. We wanted to share our struggles and our journey so that the next diagnosed family can see the hope our kiddos have now have with all the exciting new developments in the SMA community. Blaise can breathe independently, he will one day eat orally again, we believe he will sit independently and maybe just maybe even walk one day. All these things would have been taken away from him without stopping SMA in its tracks with zolgensma. And we even plan to start him on a new daily medication FDA approved only DAYS ago that will hopefully help him reach even more milestones (or inch stones we like to call them in the SMA world)
We hope that by reading his story we can bring more awareness to SMA (August being SMA awareness month). This is a disease that NEEDS to be caught as early as possible. Texas still doesn’t screen for this in the newborn screening test. And that NEEDS to change. No more babies need to be robbed of their strength and independence.
So here’s to the the upcoming years of watching Blaise grow stronger. Years we wouldn’t have without this amazing treatment. As we like to say around here, NOT TODAY SMA!
-Kenzie, Blaise’s mama
You can follow Blaise on his Facebook page Not Today SMA; Blaise’s Journey
Organizations that Blaise’s parents have mentioned supporting are: The Gwendolyn Strong Foundation and Cure SMA
Now, go put on your purple and tell the world about Blaise and SMA!
Y’all, I was so fortunate to meet Cody, Kenzie, and Blaise during a newborn model call. I may have squealed when I saw his cheeks and all those rolls. He was such a perfect little guy for his session. I could see how in love his parents were with him…they were excited, yet had such a calming presence, especially for first time parents! We quickly became friends on social media so I could see that sweet little guy grow.
One day, I was scrolling and saw his mama’s post with his diagnosis and my heart skipped a beat. One thing that truly stuck out to me was how positive she was considering the gravity of his diagnosis. Watching his parents run full force ahead and advocate and fight for Blaise has been incredible.
Kenzie and Cody, I hope you know that your journey and the sacrifices you are making to help Blaise thrive do not go unnoticed! I’ll wear my purple and bring awareness where I can. As always, all my love and support. -Tami