Due to a traumatic birth, our son suffered loss of oxygen to his brain (HIE Grade 2) and was diagnosed with cerebral palsy at age 3 months. He spent his first 16 days of life in the NICU/SCBU in London. At six months, after a second MRI, he was diagnosed with dystonic CP.
I first wrote about Sebastian’s cerebral palsy on World Cerebral Palsy Awareness Day, when he was ten months old.
Since that day, I have been able to write freely about Sebastian, his CP and our lives. Here are a few of our favorite/most popular posts:
–How are you coping?
–Answers to Questions You are Sometimes Afraid to Ask
–Grief and Me. And Three.
–Our Son is FOUR
–National Cerebral Palsy Awareness Day (US) 2012
–Film Possible Fete
–World CP Day (2013)
Sebastian is 6
Won’t You Be My Neighbor?
Sebastian is now NINE. He attends a school for kids with physical disabilities and also has private therapies for communication and literacy using his Tobii Eye Gaze system, as well as Conductive Education physical therapy to balance out his week. While I believe and hope for inclusion in the education system, this program combined with his private therapies is the one that can best accommodate his needs right now.
He loves chocolate (coconut) ice cream, playing all abilities soccer (in his walker), dance parties (The Avett Brothers, Serena Ryder, and the Lumineers are big requests), kisses from his little sister and going fast in his Green Blazer (wheelchair). He also has a super sense of humour (which he gets from his dad) and loves to tell jokes (using his step by step switch as well as his eye gaze, knock-knock jokes are his favourite). He’s also becoming more private with the information he wants to share as he gets older, so you will read less about him and more about me any my own journey with motherhood.
Over summer 2009, I held a fun raiser to raise funds for alternative therapies for Sebastian. We held a photography raffle and raised nearly $5500. While we were in Michigan from July-September 2009, Sebastian was able to do two new therapies, HBOT and ABM.
During the winter of 2009, we sold Seb Can Do Calendars for the year 2010 using photographs by the photographers that donated for our photo raffle. Some of the photos were new, while some were included in the raffle. The money raised from this fundraiser is being put towards equipment for Sebastian.
We have appreciated your support and donations. Sebastian’s first wheelchair arrived in June 2011. Additional funding from Easter Seals helped cover the cost of Seb’s Kid Walk walker in August 2011. In October 2011 Sebastian received his Theratogs. You helped make it all possible!
I have since retired Sebastian’s fundraiser/therapy blog.
We are so thankful that we are no longer in need of donations. If you’d like to continue to support Sebastian financially or send him a monetary gift, you can do so by donating to one of the organizations that have helped us, in his name. Easter Seals Ontario. Ontario Federation for Cerebral Palsy. Three to Be. C.A.R.D. (Seb’s hippotherapy centre). Epilepsy Toronto. Holland Bloorview Kids Rehabilitation Hospital.
Thank you for stopping by. We appreciate your encouragement and support.