As originally reported in Nottinghamshire Live, oculocutaneous albinism is a rare inherited disease thats recognizable to some; many know it for causing pale features, white hair, and light eyes. It must be inherited from both parents, and even so, the odds of a child being born with albinism is one in four. British sisters Jess and Rebecca Bennett both inherited the disease.
What is Oculocutaneous albinism?
Albinism damages the body’s ability to produce melanin which is responsible for coloring skin, hair, and eyes. Without pigment, people with albinism have completely white hair, light skin, and damaged eyes, causing vision loss. Their skin is also extra sensitive because of the lack of melanin, being both fragile and easy to burn in the sun. The condition lasts for life, but does not progress over time.
The Sister’s Close Bond
The girls shared many extra needs to protect their delicate skin and vision. It was scary for each of them and their parents. When they were children, the parents worried they wouldn’t be able to go to school. They can only see within a few feet and have a sensation of bright whiteness when in light. They must wear sunglasses to deal with the brightness and use iPads to magnify text to deal with their reduced vision. They use canes to get to school and have a support dog named Viking, who walks Rebecca to school. They visit specialists regarding their vision every few months together. The two girls grew up supporting each other through their daily lives, forming a close relationship and each excelling in school.
The girls have a very vibrant friendship; adults comment on how they walk hand in hand. The girls and their family are working towards raising awareness of genetic disorders and are pairing with Genetic Disorders UK, a charity for children in the UK that raises money that aims to transforms the lives of children with these genetic disorders.
