A LITTLE girl who was unable to communicate has been given a machine to help her connect with family and friends through eye contact, thanks to a national fundraising campaign.
Seven-year-old Skye Wellesley from Hook was diagnosed with the rare Rett syndrome at 15-months-old and is now wheelchair bound and fed through a gastronomy tube.
When she was born, Skye appeared to be a healthy baby, but the genetic disorder causes sufferers to progressively lose learnt skills.
Aged one, Skye could make a few initial sounds, hold a spoon and feed herself.
But within days she had lost these skills and could no longer communicate verbally or grasp objects, and lost the ability to swallow.
However, Skye’s life has now significantly improved thanks to charity Genetic Disorders UK, which is funding a special machine for her school through its annual Jeans for Genes Day.
The Tobii Eye Gaze machine enables Skye to make options and communicate with her family and teachers at Henry Tyndale School, in Farnborough.
Her mother, Emma, 37, said: “One day I remember her holding a rattle in the highchair, the next day she couldn’t hold it at all. She wasn’t able to hold a spoon and feed herself. Within days she had lost the limited skills she had.”
Emma, who has two other children, Oliver, eight, and Islay, four, said she was initially in denial that something was wrong, but said alarm bells started ringing when her daughter didn’t recognise her when she came into a room.
When Skye was diagnosed with the condition, Emma said she and her husband Christopher, 49, were devastated.
She added: “It was a big shock. I went through a lot of emotions. I was on my own coping at home and it was very difficult. I wanted to run away.”
The disorder affects approximately one in 12,000 females, and in the majority of cases occurs because of a fault in the child’s gene, which happens spontaneously at conception and is not hereditary.
Skye’s future is uncertain – she could live until her 30s, but many girls with Rett do not make it into their teenage years because colds and pneumonia can be too hard to fight off, and seizures can also cause sudden death.
Emma said: “I spend every day worrying if she is going to be alive the next day.”
However, the new machine has improved Skye’s life.
Emma said: “This equipment is amazing. Skye communicates with us through eye contact letting us know whether she is tired or if something hurts as she is in quite a bit of pain. She uses the machine to make choices and give her options.”
This year’s Jeans for Genes Day is on September 19, when people are asked to wear their jeans to work or school in return for a donation.
The event will raise money for a second Tobii Eye Gaze machine for Skye’s school.
For more information visit jeansforgenesday.org.