Jackson - Loves watching cars, Age 7.5
Written By Jackson's Mom
On November 27th, 2012, our son Jackson came into our lives. I remember his round plump face resembling his sisters.
Our first six months were a blur. We juggled opening a new restaurant and our very busy four-and-a-half-year-old daughter. Jackson was a wonderful baby. He was engaged, social, and very happy. So, him not reaching his milestones was not a huge concern. By his eighth month check up, I remember the doctor asking is he cruising furniture? I remember this sinking feeling in my stomach. The answer was no. All Jackson was able to do at that age was sit when I seated him. He was content just sitting. No crawling, let alone cruising furniture.
That is when the testing began. From routine bloodwork to Xray’s and MRI’s. We were at BC Children’s Hospital at least once a month speaking to various departments trying to figure out Jackson. Throughout the entire process Jackson was a rockstar! We were finally connected with Biochemical Diseases at Children’s Hospital when Jackson was six years old and that is when the Genetic testing began. Jackson’s DNA was entered into a global database to compare his DNA with other rare genetic mutations throughout the world. After about a year or so and several rounds of comparing DNA they found a match of a mutation. Jackson has a rare genetic mutation of the SATB2 gene. Although it is an extremely rare genetic disorder, it does have a name attached to it…. Glass Syndrome. There is no cure for Glass Syndrome at this time although there are plenty of cutting-edge technologies being developed that may benefit Jackson down the road.
The major effects of Glass Syndrome that Jackson experiences is that he is nonverbal, has difficulty walking and is developmentally delayed. But despite his challenges, Jackson is so full of life! He enjoys going for walks, he loves playing with cars and tossing a ball with his friends. One of his favourite pass times is to sit on a restaurant patio and watch all the cars drive by. He is always smiling and laughing with his friends and brings such joy to everyone who has the pleasure to meet him.
We are so very fortunate we live in such an inclusive community. We have such a fantastic support system. We have met some amazing parents and kids at our school. We first tried PK Beans a few years ago. Jackson at the time was quite slender (and still is) so the adjustable waist and drawstring that sinches the waist in is a bonus! Also, for a kid who wears his knees down on all his pants, we just love how durable the pants are! Jackson is so excited to be back at school after taking a year off due to Covid. He is really enjoying seeing his friends again and starting his journey in Grade 4.
Super Beans is a space dedicated to children who have overcome challenges in their life and are thriving today. These stories, told by their families, continually inspire us and we hope that sharing them can positively impact you and your family too.
We want to say a huge thank you to Jackson and his mom for sharing his story. We recently met up with Jackson when taking photos for our Fall photoshoot and we knew we had to feature him the moment we saw his beautiful, sweet smile. It is infectious!
Do you know a Super Bean? We would love to share their story! Email us at email@example.com.