I am a six year old girl. I have a mom and dad and three brothers. We like to play, give kisses and go out to eat together. I was born with a very rare genetic syndrome called Greigs Cephalopolysyndactyly contiguous deletion syndrome. There are 200 people in the world with GCPS but I am only one of two in the world with my deletion, which is much larger than the others who have GCPS. I am six years old but mentally that of a 6 month old. I can’t walk or talk and I have many medical diagnosis. I am Immune Deficient, I have diabetes, epilepsy and have a VP shunt for hydrocephalous among many others. I am the sweetest girl though and love to give affection. I am super resilient, happy and blessed!
Q: What is your favorite class or activity in school?
My favorite things at my school are the sensory room and the pool! I absolutely love both of those!
Q: Do you have a favorite food or place you like to go for a special treat?
Mac and Cheese is my all time favorite. I am not a picky eater and eat everything except avocado but Mac and Cheese is where it’s at!
Q: How about a favorite movie or TV show?
Mickey Mouse-literally the only thing I will watch or that will get my attention. I have seen every single episode 100’s of times. I never get tired of it.
Q: You always show a fabulous sense of fashion, do you have a favorite outfit or accessory that you like to wear?
No certain outfit but I am a rep for a small business bow shop called Aria Mae Bow’s so I of course love wearing those to accessorize all my outfits but mom buys a lot of my clothes online from momma’s who work from home making clothes so that they can stay home with their babies and still make a living.
Q: What are you passionate about?
Mickey Mouse, Food and Life
Q: What do rate a 10 out of 10?
Mickey Mouse Clubhouse
Q: Do you have a favorite season of the year and if so why?
I would say summer so I can go swimming a lot. I really love the water!
Q: What is something you would really love to do or accomplish?
My mom says I am working so hard to stand on my own or with a walker- maybe someday I will be able to walk independently with my walker- or learn to feed myself on my own!
Q: What person, experience or event has made the greatest impact on your life or been your inspiration?
Probably the paramedics, nurses and doctors that have saved my life on several occasions. They are true life heroes and deserve all the happiness and goodness this world has to offer!
Q: What three words come to mind when you think of “Home”?
Safe space, comfort and love