We are delighted to introduce Oda Felicia Abdelmaguid to the community. She is a Norwegian young woman who created her own personal project called “The Huntington Chorea Project“.
More photos in her instagram: @Odafelicia
As you can see in the pictures on the left, it’s a visual and creative project that everyone can find on social media, with the purpose of raising awareness of Huntington’s disease. However, this is an ongoing project that will be released gradually for the next couple of years (from 2007 until 2025).
Several of her publications are incredible songs in which she expresses her feelings, doubts and hopes about the disease and how it can affect her family and loved ones.
“The Huntington Chorea project is a collection of feelings in whatever shape I felt them during these years when the sorrow became a friend and the only thing steady in my sudden world of insecurity.” – Says Oda Felicia, in a short conversation with us.
Here you can listen to some of her songs:
Oda is not the only talented musician in her family, her husband Magdi Omar Abdelmaguid is a Norwegian rapper and audiovisual artist. He is best known as one of two members in the Norwegian rap band called Karpe.
I grew up in a family deeply affected by HD. My aunt and uncle were sick, but I didn’t think it would impact my life directly up until the day I realized my father carried the gene as well. That was a game changer, as I know it is for everyone finding themselves in the same situation. Not only was I going to lose my dad. Would I lose myself?
We weren’t too close growing up, my father and I. I don’t remember much from my youngest years, but as I grew older I do remember a lot of arguing and difficult feelings and at times a lot of rages. I was afraid of him, and it breaks my heart to say that, because when he finally agreed to genetic testing and his result came back positive, he let his guard, which I guess he had been keeping up his entire adult life, down, and he became the most loving and caring father. It filled me with a joy I’d never experienced before. But it wouldn’t last.
I was holding on for dear life, but he was slipping through my fingers.
It broke my world completely, and I went into a heavy depression lasting for years.
I couldn’t talk about it.
But I did play. And when I played, I allowed myself to feel.
– Oda Felicia.
Join our Teaming initiative and support the European Huntington Association in bringing hope and help to families affected by Huntington’s disease. 💙 Together, we get stronger.