Hope for Evan

Evan Paterson is 2.5 years old and is heading in for brain surgery on ...... . But for that to make sense we have to go back 2.5 years when he was just born. 

My pregnancy with Evan had a lot ups and downs, to be honest I wasn't even sure id have a child of my own with PCOS and being on medication for Epilepsy that can have a negative effect on getting pregnant. But here we were excited to becoming parents. I had a lot of morning sickness and even some liver issues during pregnancy. At around 16 weeks we went to Mount Sinai Hospital in Toronto where they did an ultrasound and found that Evan had echogenic bowels on his ultrasound. We were then tested for any illnesses as well as our genetics to see if he was okay. Everything worked out and then it came time for birth. We went into SouthLake Hospital in Newmarket where I was induced but after 48hours of failing to progress I had an emergency c-section. I needed 3 epidurals and 1 spinal tap to finally not feel it, I couldn't breathe, and I was numb from the chest down it was a horrible experience but while that was happening Evan was born at 12:49 am on March 2nd 2018. He unfortunately emerged into the world not breathing, they rushed in and got him back and we left the NICU 2 days later and it felt like we were finally on the right track. 

The first few months of Evans life was amazing, he was hitting milestones and stealing hearts. And then he was 4 months old and started making really strange movements, his arms would jerk out and his eyes would roll up as his head would slightly drop. I felt something was off and told my husband about them and he monitored it for the next couple days. Over those days the movements got more frequent and he would space out while they where happening, I got the sicking feeling that he was having seizures because I was paranoid of passing them on to him. We went into Uxbridge Hospital and they referred us to Markham Stouffville Hospital and we met Dr. Mohile. She checked Evan out and she took a look at the video I had taken of him during one of the episodes. She then immediately referred us to SickKids and we had an appointment the next day. 

We got to SickKids the next morning and they did an EEG on Evan and confirmed that he in fact was having seizures and it was what they called infantile spasms. We learned that each time he made a movement was one seizure and sometimes he would do them for up to 10 mins. We met Dr. Sneed at SickKids and he became Evans neurologist. We did blood tests on Evan to see if he had any genetic markers for epilepsy or seizures or anything else really and they all came back negative, which was great but left us wondering what was causing these seizures. Evan started medication and it partially worked but since they didn't fully stop. Dr.Sneed talked to us about putting Evan on ACTH steroid to get rid of the seizures, we talked about it and we said yes. It was a six weak treatment plan and it worked. Evans seizures stopped and he was no longer considered epileptic. That was the end of September of 2018. 

Fast forward through PT, OT and Speech therapy, being seizure free and being almost caught up the breaks were slammed when he was diagnosed with ASD (Autism Spectrum Disorder) Feb 26 2020. But to our surprise Evan was flourishing with his therapies and amazing us everyday with new things he was learning and how fast he was learning them. Everything was great until July 1st 2020 where Evan had his first seizure in almost 2 years. We called SickKids right away and they saw him 2 days later, July 3rd Evan had an EEG and was diagnosed as epileptic, he was having what they call epileptic spasms. He started out with only a few but slowly made his way up to anywhere from 10-40 seizures in a cluster with anywhere from 1-5 clusters a day. Sept 9th 2020 Evan had an MRI followed by an EMU on Sept 21 2020 (a longer EEG). During is EMU Dr.Sneed came in and said they found what was causing the seizures, they found a lesion on the right side of his brain that happened during development in the womb and laid dormant until now.  Once the EMU was complete they merged them together and found that the lesion was bigger than they thought and that his seizures where far worse than before in July. The team at SickKids determined that the cells having seizures had spread all long the right side of his brain. The team had a meeting and we were told that Evan would need brain surgery in order to stop the seizures. Keep in mind that at this point Evan had regressed in his development back to a 1 year old, and was on 3 medications that weren't stopping the seizures. 

This led us to making the hardest decision we have ever had to make. Evan will be having a Functional Hemispherectomy which will disconnect the right side of his brain in hopes of getting him seizure free so he can have a chance at developing and being able to live a long and happy life. 

With this he will loose peripheral vision in his left eye, all most all his fine motor skills in his left side and will have to learn how to do everything all over again like walk, talk or babble in his case, eat and more. 

If we don't do the surgery Evan will continue to regress and he will stay like that for the rest of his life. We want to give Evan the best chance possible and for us to do that he needs rehab and we both need to be there to support him. We find out today (October 14th 2020)  when the surgery will take place and will update you with more details as soon as we have them.  

We are a small family from Uxbridge, ON and any help you can give is extremely appreciated. Donations will be used to help with Evans recovery and any extended rehab and therapies he will need after surgery. It will also help us be there with him every step of the way. Any unused donations will be donated to Grandview Kids Children Center which is not only local to us but near and dear to our hearts as they have helped Evan with rehab before.

From the bottom of our hearts we thank you for any donation or share you can give us. 

We will post updates as much as we can. 

Thank you for all of your help, 

The Patersons


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Samantha Bishop 
Uxbridge, ON
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