A few days after this seizure Sebastian was diagnosed with a rare, untreatable brain malformation called polymicrogyria and the prognosis was grim. Then at 1 year of age the genetic tests came back to reveal even more news. Sebastian was diagnosed with a rare condition called MCM syndrome, a little less than 200 people in the world are diagnosed with this. Sara and Shane knew he was special but not this unique! A true miracle for sure.
The doctors told Shane and Sara that SJ would be permanently disabled and would always suffer from seizures. He is at risk for tumours, Charari Malformation, pneumonia, sudden death of an epileptic (SUDEP), hip displacement, broken bones and the list goes on…. They were told that it would be unlikely that SJ would live to be an adult, that the co-morbidities related to polymicrogyia are what will harm him the most. Most of theses co morbidities are related to immobility, so Sara and Shane are driven and are on a mission to get this little miracle moving!!! Sebastian at 6 months of age spent 60 days in the hospital battling through infantile spasms, grand mal seizures, intubation, toxic brain changes from seizure medication, detox from medication, and a coma like state. The medications were not working to control his seizures and every day Sebastian seemed to regress or slip away further and further. Sebastian had regressed so much he forgot how to hold his head up and how to swallow and eat. The Doherty's were heartbroken and devastated as the dreams for their healthy baby boy changed so drastically.
In his first year of life little Sebastian has had 3 MRI's, 14 EEGs, 8 chest X-rays, 1 CT scan and suffered through 7 failed seizure medications. Numerous blood sticks, spinal taps and catheters. More than any child should ever have to endure.
The Doherty's were finally able to bring SJ home with a nasal gastric feeding tube in place and a pile of new medical equipment and information that no parent should have to learn. They are waiting for a surgery date for a permanent g-tube so Sebastian can eat safely and continue to thrive. As they waited for help from the government in the form of a developmental aide/physio assistant, who never has come, Sara did a pile of research and on a very limited budget, began to take their son to private physiotherapy and other alternative treatments to encourage movement and development for SJ. They have witnessed through this alternative therapy (called ABM) huge successes in SJ! He has begun laughing and rolling and making eye contact again. Just a few days ago he started making the effort to sit on his own. This is huge as Sebastian was “supposed” to not do anything! They now have hope for a brighter future for their beautiful son!
Unfortunately SJ's ABM treatments are not covered by the government and come at a hearty cost. With Sara reluctantly back at work again to provide for her family and Shane on stress leave caring for SJ, they are in dire need of help to continue this treatment. It has helped him amazingly!! Please help us raise funds so SJ can continue his therapy! The Doherty's are full of hope and confidence that SJ will be proving the doctors wrong, please help them by giving whatever you can to support them.
- Robyn Daudelin
- Shawnti Hooper
- Margaret Kerr
- The Dev's
- Kerry Godbout
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