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Sebastian

Cantius
2014 was both the best and worst year of our lives. In January we welcomed our first child Sebastian to the world. It was wonderful having a gorgeous perfect baby, being parents and being a family. In May Sebastian had a Seizure at 4 months of age. He stopped breathing and mom gave him CPR and called 911. This is where 2014 became the worst year of our lives. Sebastian was diagnosed with a rare, untreatable brain malformation and the prognosis was grim. "For sure he’ll be disabled, for sure he’ll have more seizures and most likely he’ll pass away before he becomes an adult” said all the doctors in his care. Devastated would only partially describe how we felt. Unable to go back to work early as previously planned mom stayed off the full year. Dad went on stress leave then EI as Sebastian battled through infantile spasms, grand mal seizures, focal seizures, intubation, epileptic encephalopathy, a coma like state and a total of 60 days in the children’s hospital. We were living in a nightmare. Sebastian had regressed so much he forgot how to hold his head up, how to swallow and eat, and even how to poop. Since May Sebastian has had 3 MRI's, 12 EEGs, 8 chest X-rays, 1 CT scan, 7 failed seizure medications and will be going for G-tube surgery. He is a trooper.  Finally we were discharged from hospital. The advice from the medical staff was take him home and love him. Well this didn’t feel like the best advice. Of course we love him, but there's more we can do.

Mom researched everything about his condition and then what treatments including alternatives were shown to work with people with his condition. We signed up for government provided early developmental  interventionist to come to our house. Today at a year old this service has not been provided for our son. You begin to feel helpless when treatment that was guaranteed for your child does not happen. Its heartbreaking. So our family on a very limited budget has had to take our son to private physiotherapy, and other alternative treatments to encourage movement and development. We have witnessed that anything for special needs people is at an inflated cost. Thank goodness the Sarah Faith Hogan Memorial Foundation has been here to help us with the cost of his treatments and equipment. They are our saving grace. We had already maxed out savings, credit and all the money we could gather to stay home with him, go to appointments and to help Sebastian. Costs add up quickly. I mean every parent would do anything they could to help their child, just as we are trying to.

The good news is some of his alternative treatments have helped him come back to us. He’s laughing and rolling and making eye contact again. We have hope and will continue to. We are seeing development in tiny inch stones and will take it. Again thank you SFHMF for helping us through this time.

Sara,Shane and Sebastian

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Sarah Faith Hogan

november 8, 2004 - january 22, 2006

The Sarah Faith Hogan Memorial Foundation was formed in loving memory of Sarah Faith Hogan and is dedicated to the selflessness and courage of Sarah’s grandfather and mother, Chuck and Cathy Hogan.

 

The Hogan’s immediate and extended family are a true inspiration and a testament to the power of love and the family bond.

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