‘We thought our girl was clumsy — but the reality was so much worse’

Nine-year-old Grace will eventually lose the ability to walk.

‘We thought our girl was clumsy — but the reality was so much worse’
Jo, 45, her husband Carl, 51, and daughter Grace, 9. See SWNS story SWTPclumsy. A
Jo and Carl are desperate to raise funds for Grace (Picture: Jo Bucknell-Smith / SWNS)

A rare condition means a child’s ‘clumsiness’ was actually something far more sinister.

Grace Bucknell-Smith, nine, was falling over up to 30 times a day, which her family initially put down to being clumsy.

But she also began experience pain and aching, and a constant tickling sensation in her arms, fingers, knees and toes.

The schoolgirl was eventually diagnosed with hereditary spastic paraplegia and KIF1a — genetic conditions that cause stiffness of the legs and leave her in constant pain.

Her condition is progressive, and will eventually stop Grace from walking all together.

Mum Jo, a teaching assistant, from Peterborough, said: ‘She was clumsy. She’d fall over all the time – about 30 times a day.

Grace, 9 who was diagnosed with Hereditary Spastic Paraplegia and KIF1a ? genetic conditions which cause stiffness of the legs. See SWNS story SWTPclumsy. A
She will soon stop walking all together (Picture: Jo Bucknell-Smith / SWNS)

‘She’s absolutely all over the place. She wouldn’t put her hands down when she fell down.

‘We knew it wasn’t right. It’s heart-breaking every day.’

Jo and her husband, Carl Smith, 51, a team leader at a manufacturing company, saw that Grace was falling a bit behind on her milestones when she was younger, but they weren’t worried at first.

However, by the time Grace turned three, the tot was noticeably struggling with her speech and falling often.

Jo said: ‘She didn’t seem to speak very clearly. It was hard to understand her.

‘We thought “this is a bit strange”. She walked late but at three she seemed to be tiptoeing and crossing her feet.

‘The clumsiness, balance, falling over all the time and how her co-ordination was almost non-existent.’

Staff at Grace’s nursery were also worried, so the family took her to the doctors.

But there, they were just told that nothing showed up on tests, and that their tot was simply a bit ‘slow’ and would catch up soon enough.

So Grace joined a mainstream school when it was time for her to move up, but she struggled to keep up with other kids her age.

Carl, 51, and his daughter Grace, 9. See SWNS story SWTPclumsy. A
Grace loves Disney and dancing (Picture: Jo Bucknell-Smith / SWNS)

After ‘exhausting everything’, Jo took Grace for genetic testing in 2020.

This, at last, found what the true cause of Grace’s problems were – she had Hereditary Spastic Paraplegia and KIF1a.

It is a progressive, incurable disease that causes weakness and stiffness in the leg muscles.

Jo said: ‘We had our answer but couldn’t do anything about it but just watch these diseases take over her body.’

Over the years, Grace’s family has had to watch her condition get worse.

Even though they’ve tried orthotic boots, ankle and foot splints, serial casting, Botox, and physiotherapy, nothing is staving off the diseases.

Grace, 9 who was diagnosed with Hereditary Spastic Paraplegia and KIF1a ? genetic conditions which cause stiffness of the legs. See SWNS story SWTPclumsy. A
Genetic testing finally revealed the cause of her health problems (Picture: Jo Bucknell-Smith / SWNS)

Now, Grace needs to use a frame to help her walk and keep her upright, and uses a wheelchair when she gets tired.

She also struggles with behavioural issues and with sensory overloads, which can be caused by something as simple as the sound of birds.

Jo said: ‘The main issue is the mobility and the aches and pains.

‘Grace struggled to walk independently; she tiptoes. She is walking smaller distances and contractions in her ankles are forming.

‘She has tickling and aching in her arms, fingers, knees, and toes every day.’

Now, Jo and Carl are trying to raise the funds for a surgery that will hopefully help Grace walk independently, and stop her having those daily aches and pains.

They need to raise £22,000 to pay for the surgery.

Jo said: ‘Having the private SDR operation will take away spasticity, pain, and spasms, which will involve fixing and blocking the nerves that are damaged in the spine.

‘Hopefully then, Grace will be able to walk without relying on her frame and wheelchair so much, enabling her to work on building up her muscles to give the best chance of mobility later on.

‘Without this we have been told the body will continue to degenerate and make contractures, deformities and the future will be painful.

‘She’ll have difficulties moving around, and she will depend on her wheelchair.’

Even though she’s in pain, Jo said Grace is always smiling.

Jo added: ‘Her body can’t keep up with what her brain wants to do.

‘She loves Disney. She loves dancing. She wants to twirl around.

‘She’s a fighter. I don’t want her to be in a wheelchair.

‘I want her to be as independent as she can.’

Do you have a story to share?

Get in touch by emailing [email protected].

MORE : ‘I thought I had food poisoning – now an incurable condition means I could lose my job’

MORE : Treatment on the horizon for painful condition affecting millions