Black Country family raising money to allow four-year-old to communicate with his eyes
For most parents, keeping up with a four-year-old is a tiring business. A combination of boundless energy and curiosity, combined with a natural tendency to chatter, means there is rarely a quiet moment.
But for the parents of Stourbridge youngster Zac Lee-Menday, the challenge is very different. Because at four years old, Zac can neither speak nor walk.
Father Stephen Lee and mother Laura Lee-Menday are now seeking to raise £8,000 to pay for a hi-tech machine which will allow Zac to communicate through his eyes.
“He’s the happiest child you will ever meet,” says Stephen, a 36-year-old maintenance manager.
“The simplest things will keep him happy, he’s a happy little man.”
He also has a very close bond with his eight-year-old sister Ivy.
“She is amazing with him, very understanding,” says Stephen. “It can be hard at times, with him being unable to speak, but she loves him to bits.”
Laura says the couple, who live in Shenstone Avenue, Norton, were concerned about delays to his development from birth. Then, a week before his third birthday, he was diagnosed with the rare neuro-development condition FoxG1, one of just 800 people in the world.
FoxG1, which stems from a mutation of a gene of the same name, affects the development of the brain, and causes seizures, inability to control body movements, and lack of speech.
“He won’t be able to speak,” says Stephen. “At the moment he can’t sit up by himself, and he can’t walk.
The family’s Go Fund Me page has already raised more than £8,000, the first £4,000 of which was spent on an all-terrain wheelchair, which allows them to take him on walks around the woods and even on trips to the beach. But the couple say an eye-gaze machine which would allow him to communicate through his eye movements would transform his life.
“We had a trial with it a few weeks ago, and he picked it up straight away,” says Stephen.
“It works by putting a screen in front of Zac, and he can communicate by moving his eyes to look at different pictures on the screen.
“For example, to find what he wants to eat, you can put different pictures of food on the screen, and it can tell what he’s looking at.”
Laura adds: “Knowing what he is thinking, wanting and feeling is something we can’t put a price on, so as you can imagine the amazing equipment comes at a hefty price.”
Joe Hawkes, who runs Sedgley-based Crafted Contemporary Kitchens, and his son Ethan, both agreed to raise funds for the appeal.
Joe, of Gospel End Road, Sedgley, says his company takes part in the annual Dragon Boat Challenge at Himley Park each year.
Last year, after being approached by a friend of the family, he donated £700 of £1,150 raised to Zac’s fund, and says he will be entering a 12-man team in this year’s event which will be held in May. In addition, Ethan, who plays in goal for Dudley Town FC, will be running the Black Country Half Marathon on July 1, and has already had £830 pledged in sponsorship.
“A friend got in touch last year and asked if my company did any charity fundraising,” says Joe.
“After meeting Zac and the family, I had no hesitation in helping out, Zac is a lovely little lad.”
To support the family, visit gofundme.com/f/zacs-fox-family. To sponsor Ethan Hawkes in the Black Country Half Marathon, visit justgiving.com/crowdfunding, search for ‘Ethan Hawkes’ and scroll down to find the picture of Zac.
