A Lancing mother is raising funds so her son, who suffers from a rare genetic disease, can have ‘life-changing’ surgery.
Three-year-old Loui Legend Heath Herriott was diagnosed with a severe case of Treacher-Collins Syndrome at birth, which affects the development of bones and tissue in the face.
His small chin means he is unable to breathe without a tracheostomy – a tube in his neck that connects to his windpipe – and has a cleft palate and almost no ears.
After undergoing private surgery on his cleft palate, the family are now looking to raise £214,000 to pay for jaw distraction surgery in America, which would remove the need for his tracheostomy. His mum, Karly Herriott, said the procedure would be life-changing. “This would transform our lives,” she said. “It would mean he could be a normal child and enjoy a normal life.”
The tracheostomy means Loui is unable to speak as air cannot reach his voicebox. He is also unable to eat or drink, and has to be fed with a syringe directly into his stomach.
He requires round-the-clock supervision to make sure he continues to breathe safely and Karly is only able to work one day a week as a vet in order to care for him.
Despite his setbacks, Karly said Loui has a confident side and ‘knows how to carry himself’.
The success of his Instagram pictures led to him being signed by Zebedee Management, a modelling agency which ‘redefines the perception of beauty, disability and diversity’.
He is also supported by Loui’s Army, and about 80 people joined Karly and her partner for a fundraising cycle from Arundel to Bexhill in August.
A fundraising auction, raffle and disco is also planned at The Ladies Mile pub in Mackie Avenue, Brighton, on October 5.
Donations can be made at www.gofundme.com/louilegend