Bath toddler Benjamin Hurd defies setbacks to take his first steps

A unique toddler from Bath who is the only person in the world with a rare chromosome deficiency has defied all the odds to walk.

Eighteen-month-old Benjamin Hurd was born missing a significant part of a chromosome, a condition so rare that no one else in the world is thought to have it.

The youngster from Bear Flat has been left deaf in one ear and with problems with his eyes, but has defied all odds to take his first steps.

His father Richard, 42, a finance director, said: “Just before Christmas Benjamin started to walk and he is now charging around, albeit slightly wobbly and clumsy at times.

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His condition was spotted after Benjamin was just four weeks old. He had been in the car with his mum Arusha, 37, driving to Cardiff when he started going blue and struggling to breathe.

Mrs Hurd stopped the car on the M4, and Benjamin was air lifted to hospital, where he was found to have a floppy trachea.

Mr Hurd said: “When Benjamin was born he had breathing problems, and although some investigations were made and he was found to have a small hole in his heart, he came home after two weeks.

“However when he was four weeks old, he stopped breathing, and was rushed to Bristol Children’s Hospital where tests revealed he had a floppy trachea which was affecting his breathing.”

Consultants also discovered that Benjamin was deaf in one ear, which together with his eye problems promoted them to do a genetic test.

This revealed that he had a very rare chromosome deletion, and the family were told that he might not be able to sit up until he was three, would have trouble walking, and may be left with learning difficulties.

For help and support the family turned to Brainwave, which helps children with disabilities to reach their full potential.

The charity put together a programme for Benjamin, to help his parents, who also have a daughter Gracie, three.

Thanks to the support he has received, Benjamin is now able to walk unaided, and the family are full of hope for his future.

Mrs Hurd said: “Brainwave have been amazing, and they have really helped Benjamin.

“We can’t thank them enough.”

Charity’s help ‘has proved so valuable’

Dad Richard Hurd said without the support of Brainwave, his family may be telling a very different story.

He said: “Seeing Benjamin walk has made us think about all the valuable input the Brainwave therapists have given us and what a difference that has made.

“I can’t help but feel that the key with Benjamin’s gross motor skills development was to assess him at a really young age and iron out any potential problems early on.

“Thanks to Brainwave, that is what we did.”

Children on the Brainwave programme have a range of conditions including cerebral palsy, downs syndrome, and autism.

The charity works at home and in school with children and their parents.

The 31-year-old organisation is now working with more than 550 children with disabilities and special needs from throughout the UK and Ireland.

Its first centre was set up in Bridgwater in 1982, and there are now two more in Essex and Warrington.

For more information visit www.brainwave.org.uk, email enquiries@brainwave.org.uk or call 01278 429089.