Sussex

Loui Legend: Toddler with facial deformity picked as model

Loui Legend - photos sent to clothing website by his mother Image copyright Karly Herriott
Image caption Loui first came to the attention of the clothing company when his mother sent in these photos

A toddler born with a rare genetic condition has been picked to model for an online children's clothing company.

Two-year-old Loui Legend, from Brighton, has Treacher Collins syndrome, which affects the development of the bones and tissues of his face.

He was chosen as a brand ambassador for Lulas Dudes & Dolls after his mother Karly Herriott sent in a photo of him wearing one of its products.

The company has also made T-shirts to help fundraise for operations he needs.

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Loui's condition is so severe that he has to have a tube inserted into his windpipe in order to breathe, and he is fed through a naso-gastric tube.

He also has to wear a bone-anchored hearing aid on a headband to be able to hear, and is unable to speak.

Loui requires 24-hour care and faces a lifetime of hospital trips, procedures and operations.

His parents have been raising funds for specialist operations which would improve his quality of life, but are only available in the US.

Image copyright Go Fund Me/Karly Herriott
Image caption Karly Herriott said as well as raising funds, she wanted to raise awareness of the condition
Image copyright Lulas Dudes & Dolls
Image caption The clothing firm has created a range of T-shirts dedicated to Loui to help raise funds

What is Treacher Collins syndrome?

The condition is also called mandibulofacial dysostosis, and it affects the head and face.

It is believed to be caused by a change in the gene on chromosome five, which affects facial development.

Characteristics include:

  • Down-slanting eyes
  • Notched lower eyelids
  • Under-development or absence of cheekbones and the side wall and floor of the eye socket
  • Lower jaw is often small and slanting
  • Forward fair in the sideburn area
  • Under-developed, malformed and/or prominent ears

Most children with Treacher Collins have normal development, but benefit from early intervention speech and language programmes.

Source: The National Craniofacial Association


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