Sebastian’s Story #GiveaHug Day

Sebastian’s Story #GiveaHug Day

For eight-year-old Sebastian and his mother Nadine, their four-year brain tumour journey has been a mix of emotions and experiences that can only be described as hopeful and passionate.

When Sebastian was four, he started having seizures. Upon first view by health care professionals, there seemed to be no explanation.

But the seizures continued and before long, Nadine found herself becoming “a momma bear,” and ardently advocating for Sebastian, often referred to as Seba. “I just knew there was something wrong,” she explains.

Persistence for her son’s well-being brought to light the diagnosis of a non-malignant brain tumour. Nadine says, “It was quite large and I’m frightened to think about what may have happened if we hadn’t found it.”

Very quickly Seba was in for surgery to remove a portion of the tumour. When she thinks back about that time, Nadine remembers how scared she was. “We kept this huge diagnosis and problem to ourselves. By doing so, the problem didn’t seem so large and was easier to deal with. We just wanted him to be healthy again, and as soon as his surgery was complete and he was smiling again, we moved on.”

Seba recovered from his first surgery quickly. He was discharged from SickKids Hospital in Toronto five days after, following a remarkably quick recovering: he proved his resilience with a rambunctious stint of jumping on beds – his and those of other patients!

Despite the surgery, Seba’s seizures continued. For the last four years, Seba has tried a variety of medications and had many brain scans. Recently, it was decided that a second surgery was needed to remove the remaining tumour, and hopefully, end the seizures too.

The prospect of another brain surgery brought the fears from four years ago right back to Nadine. One of the first things Seba said was, “Mommy, you need to be brave and I’m going to be brave too. I don’t want you to be alone, Mommy. I want you to have the world’s support when I am in surgery.”

From this conversation came the idea of “Give-a-Hug Day” – an inspiring effort to give hope to Seba, to his mom and to prove to Sebastian that there are many people willing to support and give love. With the idea for “Give-a-Hug Day” blossoming, Nadine shared the idea online with a video. Soon, media were calling to talk about this compassionate little boy and then Brain Tumour Foundation of Canada declared March 5th as “Give-a-Hug Day.”

This sentiment has now reached thousands of brain tumour patients and has created a global movement of hugging on March 5, 2015 the day of Seba’s second surgery

For Nadine, raising awareness about pediatric brain tumours and of the importance of parents advocating for their children is a wonderful byproduct of her efforts.

“It’s amazing to me,” she says, “how this situation in which I was so scared and uncomfortable has started to become something incredibly beautiful and healing.” 

2016 Update: For the anniversary of Give A Hug Day, Sebastian’s family wanted to thank everyone who gave hugs and thought of the family on March 5, 2015.  All those hugs clearly made a difference, as today Sebastian is happy, enjoying life, and continues his journey upward of recovery. Sebastian will be going for an MRI on March 4, 2016 and we are sending the power of hugs his way again for that.

Thank you Nadine and Sebastian for sharing your story and for inspiring "Give-a-Hug Day"  - an inspiring show of hope and support.

 

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Story posted: March 2015


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