Meet Genell! She is a sassy nine year old twin, and you can always find her dancing along to music and watching Elmo! She has such an optimistic mindset towards her treatments and a loving and supporting community always by her side. To learn more about the amazing eye gaze device she uses to communicate, her chromosomal deletion, and her charming personality, read the interview below!
1. To start off, can you tell me a little bit about Genell? Genell is 9 years old and is a twin! She lives with a chromosome deletion that is so rare that it does not have a name and has some other common conditions including Cerebral palsy, epilepsy, needing a G-tube for feeding, and being nonverbal. She most recently started using an eye gaze device which says words based on where her eyes are placed on the device!
2. What would surprise people the most about Genell? She has a big personality and loves music!
3. When someone meets Genell for the first time, what do you hope they think? I hope that they see the normalcy in her. Although she may look different, she is still a 9-year old that has feelings.
4. What does Genell love to do? What is her personality like? Genell loves music and Elmo. She is a sweet and sassy little girl and brightens a room with her smile!
5. What is the most important thing for someone to understand about Genell? I want someone to understand that she is smart. She may not be able to express what she is feeling, but she knows when someone has entered a room. She knows when her favorite songs are on. And most importantly, she can tell you what she wants or doesn't want with her own wonderful ways of communication, even if they may be out of the ordinary.
6. Are there any resources which you recommend if anyone wants to learn more about Genell's condition? Due to her condition being so rare, there are not any specific resources regarding her condition. However, there is a wonderful organization called UNIQUE (rarechromo.org) that advocates and provides support for families living with a rare chromosomal disorder.
7. If you could tell the world one thing, what would it be? I would tell them that everything happens for a reason. Whether you understand it or not, learn to accept the unexpected and adjust your mindset.