We were so excited to welcome our second child into our family. This meant our daughter was going to be a big sister and that she is. She loves her brother with such a special bond.

Izac was born May 2012. Our healthy baby boy officially arrived.
My pregnancy and his birth were fairly straight forward. Our boy was one hungry little man that seemed like we could never keep up between nursing him and bottle feeding. For 9-18 months of age there was a noticeable delay cognitively, fine/gross motor and his language.
We alway said that he was too busy eating to sleep. He doesn’t have a great track record for sleeping or crying. This was our hint, it really seemed odd to others that we were alarmed by those two things. Parents know best!

The door opened for us when we were referred to our pediatrician when Izac was 9 months old. This was the start of the medical appointments that lead to dead ends for a few years. Izac was coming into his second year birthday, it was decided that he needed to have an Autism assessment. The struggle for severe sleep disturbance to delayed motor skills, speech and possible ADHD, we needed more support for Izac. He was approved for a few supports, but it wasn’t enough.

Age 4 Izac’s assessment came back with a moderate Intellectual disability. This was not on our radar, it was a starting point. It was an opening to possibly more therapy, social play, family support. For the next year we tried to utilize everything we could before he went to kindergarten. It was always assessment after assessment with so much confusion on what would best suit Izac.

In between all the appointments with specialists and therapies we did lots of camping and quading. We decided Izac was going to learn to drive a quad. Izac was a passenger on our quad for years before he got his. Repetition, repetition, repetition is what brings Izac to driving his own quad to this day. He started when he was 4 years old, we had a pull cord so we could stop it at any time. My husband Mark, Izac’s amazing dad, his soul sister and I all took turns on the back of his quad guiding him through his first few years of learning to drive his quad.
That was a wild ride. At age 7, on my birthday, he showed us he could do it all on his own.
This is our milestone – we couldn’t be more proud.

Back to kindergarten 2017, he started school with a category which gave him some funding. He struggled with leaving me, he struggled with any academics, he was very observant when it came to what and how he needed to fit in with his peers. Izac has the most beautiful blue eyes that stare right through you and his smile talks a million words, and his education assistant and teachers alway loved having him around. The struggle was what and how does he learn. What exactly does an intellectual disability really mean to a kindergartener that had low fine/gross motor along with being years behind his actual age. It meant that we had to figure it out. We had some new additions on the team, his school team.

Let’s fast forward to 2018- The topic of conversation was “does Izac have absent Seizures”?
This was very interesting to us; we had the first 24 hour sleep seizure test. At this point it was only a suspicious thought. The difficult part was Izac didn’t sleep much to start with and staying asleep wasn’t much of an option. It came back that it was not anything to worry about. We didn’t close that door for good it just wasn’t the time.

In between all the avenues looking for answers we went back and ended up with a Autism diagnosis too. Finally we had something to help direct us. It just didn’t feel complete. I alway knew we weren’t at the end. Izac had more to share. I just couldn’t pinpoint it.

Two years later 2020, we decided that it needed to be looked at from a neurologist. We did another 24 hour sleep seizure test. The main concern this time was Izac would sleepwalk at night crying that he had to throw up or go to the bathroom. In the morning he didn’t remember any of it and he was never sick that day, just exhausted in the morning. Yes- there is such thing has seizures starting in your stomach. Moving on Izac’s 24 hr seizures test came back. He has two different Epilepsy’s : Rolandic Epilepsy, Focal Epilepsy.

A few of Izac’s favourite activities is swimming every day whether it is in the pool at our local rec center or in our hot tub or in the bathtub. He loves to be in water. Anything that has a motor he is driving it or wants to drive it. He thrives to be outside playing in the sandbox, jumping on the trampoline, swinging in the hammock, ice fishing, snowshoeing, skiing or shoveling the snow off the driveway. Izac has a kind gentle heart that cares more about everything and everyone in this world, more than he could every express.

We found out that Izac had the DLG4 mutation a year later. The connection to other families like ours is irreplaceable and enlightening to say the least. Thank you for never giving up and giving us hope for the future.