Brave St Neots five-year-old with rare condition inspires charity event

Five-year-old Emilio Saavedra who has been diagnosed with neurofibromatosis

Five-year-old Emilio Saavedra who has been diagnosed with neurofibromatosis - Credit: Archant

A BOY who has experienced more serious illness in his five years than most do in their lifetimes has inspired family and friends to raise funds for charity.

Emilio Saavedra was just 10-months-old when his parents Mel, 38, and Jose, 37, of Fallow Drive, Eaton Socon, were told he would need surgery.

He had been referred to London’s Great Ormond Street Hospital because his head was an abnormal shape and doctors diagnosed metopic synostosis, a rare condition affecting the growth of his skull.

Emilio pulled through after a five-hour operation and, barring anything picked up during routine checks, he was given a clean bill of health.

That all changed on April 24 this year when he was taken to Hinchingbrooke Hospital, Huntingdon, having suffered what looked like a stroke.

After numerous tests, medics said Emilio, who has a brother, Luis, two, and a sister, Mimi, one, had neurofibromatosis, also known as NF1, another rare condition, unconnected to the problems he had as a baby, this time affecting the nerve tissue.

It can lead to a number of medical problems without warning, including skin lumps, disfiguring tumours, curvature of the spine and an increased risk of epilepsy.

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“We just live literally day to day,” said Mrs Saavedra. “We don’t know what he’s going to wake up with tomorrow. There’s no test they can do to say he will get x, y or z.

“He could live a very long, healthy life, he may not. It’s changed our mentality – we now live for today and see what tomorrow brings.”

With that in mind, family and friends, led by Fran Catling, have teamed up to raise funds for the Neuro Foundation, a charity supporting those affected by neurofibromatosis.

Emilio’s Family Fundraiser will be held at The Cambridgeshire Hunter pub, on Sunday.

“The Neuro Foundation is a very small charity,” said Mrs Saavedra. “It helps families like us to live with it and we want to raise awareness.

“We’ve only lived in St Neots for two years and it’s amazing the support and friends we have made.”

Stalls will include cakes, crafts and St Neots shop Beautiful Swagger. There will also be a raffle and a bouncy castle.

INFORMATION: Emilio’s Family Fundraiser will be at The Cambridgeshire Hunter pub, Berkley Street, Eynesbury, from 2pm onwards on Sunday. For more, contact Mel on 07932 154240 or Fran on 07875 586830.