Sam
I was born on February 17, 2010. I started having quick arm movements that I could not control when I was a baby. I used to cry and scream when I shook my food all over the floor at snack time. I travelled a lot with my Mum and Dad to see doctors in Germany, Holland and England until finally in September 2017 we got a letter to say that I had a CHD2 deletion of AGAA at 4233_4236 on one of my chromosomes. My body is different than other people but I still love travelling by train, subway, car and plane even though it makes me feel nervous. I worry about my seizures since they are getting worse as I get older, but my Mum and Dad tell me not to worry. They are helping me to feel better by using medicine. I have super teachers at my school that help me and care about me. I try my best and I am a smart person, I just can’t get the words out. Sometimes I think of something or try to learn and my brain stops me with a small seizure. I can’t help it and most people understand.
I live in Ottawa, Canada now and I will try anything active. My body has grown well and I am larger than most people my age. My body moves slower than my friends so I sit and watch when I get tired. My Mum says that I am a very nice person and although I find learning difficult, I teach people kindness without even knowing it. I’m not really sure what she is talking about, but I do know that CCC is working hard to find a way to stop my seizures. In the summer of 2021, me and my family raised some money for CCC by biking 100 km.
You can watch our story here: https://ottawa.ctvnews.ca/
Thank you for reading about me, and for cheering for me and my CHD2 friends around the world!
To help CCC, my family is planning some fun outdoor activities like ice skating and kicksledding with special t-shirts and raffles for CHD2 Awareness Day on February 2.
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CHD2 Heroes
Cora
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Kolman
His journey starts all the back in January of 2017. When Kolman was 14 months old he had his first seizure. It was one of the scariest days of my life.
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Sophia
I’ll never forget the night I held her for what seemed like an eternity, while she was ..per..encing petit seizure clusters. It wasn’t the first time, but it was the worst we had
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Caleb
I remember experiencing what felt like a shiver shake in the tummy, the type of shake that.. someone would have when they feel a chill.
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Finlay
Whenever he was awake he would be dosing off. I now realize that he was having seizures.. but his eyes would be rolling into his head.
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Robert
Last year, I wrote about my admission into a very exclusive, special-invitation-only parent group that will define the rest of my life.
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Luca
When the Coalition to Cure CHD2 was formed, I wanted to help but was not sure how. I would not be any good at fundraising or technical support.
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Colin
Colin was born in April 2015 at 29.5 weeks, 10.5 weeks early. He is currently 5 years old.
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Emma
Emma is a unique yet important member of the CHD2 community because of the discovery of her ultra-rare genetic problem that is quite different from the typical case of CHD2
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McKenna
Having triplets plus one in one year changed my life in more ways than I ever thought possible, but it had been a long-time dream of mine and I was up for the challenge
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Janine
The journey of our daughter living with CHD2 started back in 2007 when she was 6 years old and seeing her eyes fluttering non-stop for minutes at a time, multiple times a day
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Savannah
When Savannah was approximately 6 months old, we noticed she wasn’t meeting her milestones and had a twitch/tic like tendency.
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Julian
The CHD2 Support & Research Facebook Group was one of the most meaningful groups I joined in 2019
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Aiden
Aiden, and his twin brother Logan, was born in the US in 2005. They were much wanted IVF babies and were a blessing (and a handful) from day one
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Kate
She was born at my parents’ house as I had a horror of hospitals, having quite recently given birth to an anencephalic baby that died at birth in one
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Lucas
When I was pregnant with Lucas, things were great...until his 20 week anatomy ultrasound. The tech noticed his kidneys were a little large.
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Angel
I could not have chosen a better name for my son. An angel from the day he was born, who came to teach us lessons of life and love to his parents and siblings, to give us new ways of understanding and facing life
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Sam
I was born on February 17, 2010 and I am super excited for my birthday! I remember when I was a baby, 15 months old, when I started having quick arm movements that I could not control.
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