Best younger Work Art living with Crouzon Syndrome

Mina Rose is a good work of art, only six years old, who lives with Crouzon Syndrome. It belongs to the Craniofacial genetic condition, affecting my skull and midface bones.

Mina Rose has a store named Mina’s world (website and Facebook page). Hopefully, her store will have many people interested in buying her art prints. She loves to paint, and she hopes her art makes you happy and brings a smile to your face.

~

A portion of her sales will be donated to “Feel Better Friends” as a contribution to helping them bring happiness to chronically ill children.

Please visit the “Her Friends” page to learn about my favorite childcare providers.

~

Mina Rose published a post on her Facebook Page about her story:

~

“Hello friends around the world.
I want to tell you a little bit about me.
I am Mina Rose, but everyone calls me Mina. I am 6 years old and I live in North Carolina, with my Mom and Dad. I was born with Crouzon Syndrome in Spain, and I am the only one in my family who has Crouzon Syndrome.
Crouzon Syndrome belongs to the Craniofacial genetic conditions and it affects the bones in my skull and my midface. Normally a babies skull sutures are open, and slowly close over time as the brain is growing well my sutures were all closed and my brain was being compressed. The bones in my midface were fused prematurely as well, and the opening from my nose to my throat was blocked by bones and I couldn’t breathe. I had to endure close to 30 surgeries in my short life. Most of them were neurosurgery procedures, because my brain is the most important thing, but I also had several ENT, GI and other minor surgeries, to help me thrive and have a better quality of life.
I had a very bumpy start and there were several events, were I was in very critical condition, but I am one strong and determined girl and I don’t let anything stop me.
Today I have a VP shunt to help me with my pressure inside my head, a Gtube to make sure I grow big and strong and a Tracheotomy to help me breathe.
I am a very outgoing, super smart and spirited girl. I love animals, nature, the beach and of course painting.
When I grow up I want to work with animals, have my own little farm and create art that brings joy to everyone.
We hope my page raises awareness and inspires others.
Much love to you all,
Mina”

~

Her studio in the kitchen, all picture and short movie on her page was captured by her lovely mummy during her painting and doing other craft.

In 2019, the Feel Better Friends Project celebrated five years of making handmade dolls stuffed with love and well wishes, crafted by volunteers and donated to children battling cancer and other illnesses. (https://fbfdolls.org/)

~

FEEL BETTER FRIENDS whether I have come to know an exceptional group of people. They created a doll of me right down to my neck and nose. This is one of my favorite dolls, and I will always cherish it.

Check more activities of Mina below:

~

~

~

~

142
Понравилась статья? Поделиться с друзьями:
Добавить комментарий

;-) :| :x :twisted: :smile: :shock: :sad: :roll: :razz: :oops: :o :mrgreen: :lol: :idea: :grin: :evil: :cry: :cool: :arrow: :???: :?: :!: