Life at Trexo isn’t always about building cool gadgets and working with robots. More often than not, it is about the inspiration we receive daily from kids who at a young age face many obstacles and manage to find way to persevere with a smile on their faces. The story below is about a brave young warrior named Kaiden who is rediscovering his love for walking, one step at a time.
As told by Kaiden’s mother, Melissa.
Kaiden will be 5 years old in May. His life has been filled with so many difficulties and obstacles, yet he continues to be the most loving, sweet, caring little boy. Everyone he meets falls in love with him. You can’t help but to smile all the time in his presence. Kaiden’s story is not a short or simple one, there have been so many different contributing factors. It’s not as simple as one specific diagnosis.
Receiving a diagnosis
When Kaiden was a baby, he cried all the time and we tried everything the doctor could think of to try to help him, but nothing worked. Finally, at about 5 months old they realized that Kaiden was having infantile spasms, which are short cluster seizures. He was having approximately 15 infantile spasms a day, with anywhere from 12 to 15 little seizures per spasm. They were related specifically to his sleep, and would wake him up every 40 minutes during the night and during each of his naps.
Kaiden received a diagnosis of West Syndrome when he was about 6 months old. This diagnosis also confirmed Kaiden was experiencing hypsarrhythmia (chaotic brain waves), meaning he could not focus or retain any information. Kaiden was prescribed medication that controlled the seizures but left a huge impact on his muscle tone. His muscles were so weak he could barely hold his head up and he couldn’t hold his own bottle. The seizures had finally stopped and there was hope that he would eventually be weaned off his medication, and his muscles would start to get stronger and his delays start to diminish. Unfortunately, this didn’t happen. Although there have been small gains, and we are so very grateful for each and every one, Kaiden just continues to fall farther and farther behind his peers.
With tons of hard work and determination, weekly visits to multiple therapy appointments (both costly private, out of pocket and government funded), Kaiden was thriving! He learned how to move around in a walker, he could hold himself up in a sitting position, he was even starting to feed himself a little bit. Like every other child, those little tastes of independence motivated Kaiden to try to do more.
A sudden turn of events
On January 2, 2018 Kaiden started having a seizure and, just as with most of his seizures, he was silent. We didn’t hear him, we didn’t wake up. His seizure didn’t stop on its own and wouldn’t stop with medication. Kaiden ended up on a ventilator, airlifted to McMaster Children’s Hospital and in the PICU. He experienced status epilepticus, and now that he has, he is at a great risk of experiencing it again. It is dangerous and life threatening. So, his doctors have been increasing doses of medications and trying new medications, all of which are only making things harder for Kaiden. The side effects of these medications are just rocking his world. Many of the things he used to be able to do are becoming more and more difficult.
Kaiden’s love of walking
When Kaiden started walking in his Rifton walker, his physiotherapist called him “the poster child of walkers”. He was a superstar! Kaiden took to it so quickly, it was amazing! He was a very frequent user of his walker. We would take him to shopping malls and he would run around for hours. He even put a few holes in our walls at home, he got going so fast sometimes.
Watching that slip away from him was heartbreaking. The one thing that gave him independence and freedom and joy, taken away from him. As we have since taken him back off that medication, he is slowly starting to get stronger and get back to himself. I would give anything to help him get back to where he was before the medication took it away from him. Seeing him in the Trexo Plus, reminded me (and I think him), of how much he loved being mobile in the walker before. I am so hopeful that it will help him remember and regain his ability to run around again, like he once did.
An everyday hero
Kaiden is such a beautiful and strong little boy. He is a hero to so many people. His strength and determination are absolutely amazing considering all of the horrible and trying experiences he faces daily. He wakes up every day smiling, even through his toughest struggles. We are so proud to share him with the world, we want to give back and help others going through similar struggles, to let them know they are not alone. His story provides hope to other families like ours and so we share it as often as we can.
This amazing little boy deserves the world. He deserves every opportunity possible to live up to his full potential and abilities.
If you would like to support Kaiden in his quest to get better, please visit https://www.gofundme.com/8mwa2-help-keep-kaiden-safe-comfortable
Enjoyed this story? Check out our stories about Leo and Praneit’s experiences, as well as a our thoughts on the importance of user-centricity in designing assistive products!