Codee (CJ)
I live since 2012 in the Netherlands. I was born in 1983 to a Mother, (who passed away early 2012) and a warm, supportive, loving Father Roy, who still lives in England.
While I enjoy contact with my Father via Teams, I live my life here in the Netherlands with my adopted family. My Mom, Regina, my sister Jessica, who I share a house with and my brother.
My biological Mother got sick during her pregnancy with me. The mild cold-like symptoms didn’t raise much concern at the time. Later she learned it was Rubella and I was born with CRS.
I was born with a heart condition, a PDA. This was fixed following a heart attack quickly after birth. I’m Deafblind. I have 5% remaining vision and wear two hearing aids. I also use a wheelchair because CRS affects other muscles and I have a problem keeping my balance.
Some years ago I learned that I have some autism related symptoms. This includes some difficulty with communication, which I had help to improve during therapy. Some issues dealing with change in rules and routine and difficulty concentrating. Though some CRS warriors are on the autistic spectrum, I’m not. During tests it became apparent that it’s difficult to know precisely what causes my issues, because they can be related to combined hearing and vision loss as well as autism.
I only have one late onset symptom that I’m 100% sure of. That’s diabetes. I do however have many other ailments that are probably CRS related and my muscle issues slowly appear to get worse with age.
I may have CRS, but it doesn’t define me. I’m an enthusiastic, motivated person and I love to learn. In 2018, I started learning to read braille and in January 2019 I started learning sign language. I practice these skills regularly.
I love music and I play the keyboard. I also taught myself to play drums when I was in college, but I don’t have my own drum set. I think it would drive Jessica crazy. So I haven’t played drums for a very long time.
I like taking on the challenge of doing things that you wouldn’t really expect a Deafblind person to do. With a little occasional help from some working eyes, I enjoy photography and videography. As well as reading books in braille, I enjoy listening to audio books. I also like to be lazy now and then and play games on my iPad.
In 2023 I made a Twitch account and started streaming the games I play on my Nintendo Switch. The channel started to grow and I now have over 100 followers. In 2024 I was gifted a PC for my birthday and now stream games from there. I’ll give anything a go as long as there are good contrasting colors and sound cues I can work with. I’ve streamed Limbo. But I prefer cozy games such as Disney Dreamlight Valley and The Sims.
Roughly half way into 2017 I created a facebook group. Initially it was a group intended to bring other CRS warriors from Europe together. However, many of my international warrior friends wanted to join in with the fun and support each other, so we changed the group name and now it’s home to over 200 CRS warrior family members.
I enjoy helping and supporting people. Equally I enjoy watching people support and encourage each other. Sharing our CRS experiences not only helps us learn more about the syndrome but it also helps create a baseline which we can use to spread awareness to others. This is why our arms are also open to family, friends and caregivers.
Spreading positivity is also an important part of the group’s mission. Therefore I encourage conversations about daily life and ask what our members did. Having CRS is tough sometimes but together, we are strong and we can help each other find a little positivity in each and every day.
Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.
I hope each and every member of our CRS family will take my hand, get up and dance with me.
CRS Life 