Fundraising campaign to find a cure for rare disease affecting little boy in Milton Keynes

Ellis Grant
Ellis Grant

A brave city worker is planning a fundraising campaign to stop her young son turning into a “human statue”.

Little Ellis Grant is eight years old and is one of only 45 people in the UK diagnosed with a condition dubbed ‘stone man syndrome’.

His body is forming a second skeleton that will eventually imprison his limbs and joints in bone.

Suzanne Grant, 39, who works at Nationwide in MK, is on a mission to find a cure for the disease, officially known as fibrodysplasia ossificans progressiva, or FOP.

She and Ellis’s dad Rob are plan to tackle the Great North Run - and have already raised more than £1,000 in sponsors.

But it is literally a race against time for the little lad already has a neck fusion and problems with his feet that means he walks stiffly.

Suzanne said: “Ellis will become frozen in his own body over time.

“He knows that his bones are different to other people’s so he has to be careful – he doesn’t know the full story, as he is young and we don’t want to scare him.

“He can’t be knocked or bumped, as he can get flare-ups and his body can decide to build more bone.”

The family believe a cure is within Ellis’s lifetime and are determined to work with FOP to speed up research.

Already there are three drugs for the condition in clinical trails around the world.

Meanwhile Ellis makes the most of every day, playing with a special soft football, being helped by a classroom assistant at school, and relaxing his bones in a hot tub.

“He just takes everything in his stride and is so positive - I wouldn’t describe him as suffering,” said Suzanne.