Friday, April 18, 2014

‘She’s a happy little thing. She never complains about not being able to walk.'

There was a hush of anticipation as the crowd turned to see the girl in the flowing white dress. As she entered the church with an infectious grin, onlookers gasped and wiped tears from their eyes.

It wasn’t the bride they were so happy to see, but four-year-old Bella: the little bridesmaid they never thought they’d see walk down the aisle.

Bella Luckett has cerebral palsy and cannot stand unaided, let alone walk. But she was able to glide down the aisle with her head held high — all thanks to a groundbreaking new harness which attached her to her father, Gary, allowing Bella to take her first steps alongside her dad.

The moment was particularly precious for Gary, 29, who admits to battling with his emotions: ‘I didn’t want to cry in front of the photographers,’ he laughs. ‘But I’m away a lot with work and her mum’s her full-time carer, really, so it was great for me to share this special moment with Bella.’

As for her mum, Natalie, also 29, there was no such restraint. She says she ‘burst into tears’ at the sight of her daughter standing upright for the first time.

‘I was so nervous,’ says Natalie. ‘Before I saw Bella, I noticed my mum in floods of tears: she was further back and could see her before I did.

‘Bella was giggling and smiling as if to say: “Everyone’s looking at me!” I couldn’t help myself; I burst into tears. Gary didn’t cry but he looked very emotional.’

Bella was so distracted by the novelty of walking she forgot to scatter the tulip petals she was carrying.

‘She reached the altar and shouted: “I’ve still got my flowers!”’ says Natalie.

The congregation’s tears turned to laughter as she quickly threw them up into the air all at once.

Gary’s sister Louise asked Bella to be a bridesmaid when she announced her engagement two years ago. At that point they had no idea whether she’d be able to walk, or would have to be carried down the aisle.

It wasn’t looking good, with Bella still unable to stand or even sit up properly in the lead-up to the wedding. Then her parents came across the Upsee, a revolutionary device that helps disabled children become mobile.

News of the incredible garment had been spreading on social networking sites. Such was the demand when online sales began on April 7 that the company’s website crashed.

Designed by the mother of a disabled child, the £269 Upsee resembles a waistcoat with lots of straps.

The simple-looking garment has three parts: an adjustable waistband with back support worn by the adult; a child’s vest, the bottom of which surrounds their pelvis, with padded straps which loop round the top of the child’s legs — these two are connected by four straps which clip together at the child’s shoulder and lower back on both sides.

The third component is the ‘double sandal’, in which the adult’s shoe is joined to that of the child. These enable the adult to lift the child’s foot with each step.

It takes practice to get the hang of it: some children may only be able to stand for short amounts of time at first.

‘The first time I tried it on with Bella, she loved it,’ says Natalie. ‘She asked: “Can we walk down the stairs, Mummy?” Of course that was far too dangerous, but it showed how keen she was to get moving.’

Bella was 18 months old when she was diagnosed with cerebral palsy, an umbrella term for loss or impairment of motor function caused by brain damage before, during or immediately after birth.

‘We’d been on edge throughout the pregnancy because I’d had three miscarriages,’ says Natalie, who also has a nine-year-old son, Ollie. ‘Bella was born three weeks early, weighing 5lb 3oz. She didn’t breathe for the first two minutes, then the doctor tickled her feet and she started crying.’

There was no cause for concern at this point. They were kept in hospital for 48 hours before returning to their home in St Neots, Cambridgeshire, where Bella seemed to flourish.’

The first clue that something might be amiss was that ‘she didn’t hold herself right’. Natalie explains: ‘She was always crying and I noticed that when other people held her, she looked uncomfortable.’

Bella didn’t start rolling over at four months as babies are meant to do, but doctors put it down to children developing at different rates.

At a ten-month check-up, the doctor looked at Bella’s legs and referred her to a paediatrician. That’s when Natalie took to Google and recognised the similarity between Bella’s symptoms and cerebral palsy.

‘I was very upset,’ says Natalie, ‘because I just knew that’s what was wrong with Bella. I showed my mum and she agreed.

‘Everyone else, including Gary, kept saying she was fine. But I was like: “No! She’s not.”’

Bella was 18 months old and unable to sit properly on the ground, let alone stand or walk, when the results of an MRI proved Natalie was right.

‘I think the specialist knew that I knew,’ says Natalie, ‘because she just said really quickly: “She has cerebral palsy”. I burst into tears, thinking where would this leave her.’

Bella was diagnosed with a type of cerebral palsy called spastic diplegia.

‘Put simply, the part of her brain that sends messages to her muscles doesn’t work, so the muscles in her legs don’t know how to do their job,’ says Natalie.

‘Her arms are slightly affected, too: she can’t do up buttons or zips on  her own.

‘The doctors were honest straight away. They couldn’t say whether she would ever walk or not. With physio she might manage to do it of her own accord. If not, she might be a candidate for an operation on her spine when she’s seven or eight.

‘I am terrified of the thought of putting her through major surgery. The doctor advised us to leave it later to give her a chance to walk naturally.’

Met with such an uncertain future, Natalie says she and Gary, an oil rig engineer whose work often takes him away from home for weeks at a time, ‘both had a cry’.

Bella started regular physio and  had to use a standing frame for an hour a day.

‘For the first three-and-a-half years I was obsessed with whether Bella would walk,’ says Natalie. ‘I kept thinking about how she would cope in a mainstream school.’

When asked whether she gets depressed sometimes, Natalie’s warm smile instantly crumples.

‘I’m sorry,’ she says, wiping away tears. ‘Yes, most days . . . Sometimes you even get frustrated with your child for not trying hard enough. Then you feel angry with yourself because of course it’s not their fault.’

At that, Bella comes crawling over, clutching a toy. Her big brown eyes peer quizzically through her glasses.

‘It’s not exactly that you blame yourself,’ says Natalie. ‘You just want to help so much but there’s nothing really you can do.

‘Gary’s away a lot so it gets very, very lonely. I have some wonderful friends but there are others who seemed to fall off the face of the earth when she was diagnosed.

‘Everywhere we turned there were reminders of Bella’s disability. She can’t play at the soft play centre with the other children. She can kneel but she can’t sit on things properly: when we go to friends’ houses for lunch there isn’t a special chair for her.

‘Bouncy castle parties or discos are of course out. It even takes for ever to get to the park although it’s down  the road: we have to help her down the slide and I can’t manage that on my own.’

And what about Bella herself?

‘She’s a happy little thing,’ says her mum. ‘She wants to do everything but she never complains about not being able to walk like other children.

‘You’ll just see her stop and look at them running around. She’ll go quiet and you know what she’s thinking.

‘There was a point about a year ago when she became scared of babies starting to walk: her nephews, for example. She wouldn’t go near them. I think she couldn’t get her head round it.’

At two, Bella was given a walking frame, which she can only use for five minutes at a time because her legs get tired. She has a special buggy for longer journeys and in future will be given a wheelchair.

Bella has also been treated twice with Botox injections in her legs. In tiny doses it relaxes the muscles in some people with cerebral palsy by blocking nerve impulses. This allows better control of movement and reduces the risk of muscle and tendon shortening. The effects tend to last from four to six months.

‘She had it for the first time about a year ago,’ says Natalie. ‘I was with my mum and we were supporting her on her feet. Then suddenly she took a step forward: we were amazed.

‘It was wonderful but with cerebral palsy you know that you might take one step forward but there’ll be however many steps back.’

When she had further injections of Botox this January, the effect wasn’t so dramatic. By this point the couple were beginning to lose hope their daughter would walk down the aisle for her aunt’s wedding last week.

At the end of March, they read about the Upsee on Facebook.

‘The idea must have come  from children dancing on adults’ toes,’ adds Gary. ‘Natalie told me about it and I rang the company immediately.

‘It wasn’t yet on sale but after I explained we wanted one to help our daughter be a bridesmaid, they promised to send a demo version in white to match her dress.’

Natalie adds: ‘We were cutting it a bit fine, timing-wise, so I didn’t dare think it would ever happen.’

But sure enough, three days before the big day, the Upsee arrived.  Bella’s physiotherapist had confirmed it would be safe for her to wear as a one-off: at her next appointment she will see whether they can use it more regularly.

Meanwhile, Bella’s big day took place last Saturday at St Nicholas Church in Wilden, Bedfordshire.

‘We all went over to Gary’s mum’s, where Bella loved having her hair done,’ says Natalie. ‘The Upsee vest was strapped on underneath the white dress. There were holes in the shoulders of the dress for the straps to thread through. At the venue, we attached her to Gary’s hip belt.’

Then they were ready to walk down the aisle ahead of the bride. ‘Everyone had heard about Bella,’ says Natalie. ‘They knew it was a big moment. I could hear Gary’s granny behind me saying: “Oh, isn’t she wonderful!”’

So what did Ollie make of his sister’s grand entrance? He says he was ‘very happy’ and that she looked ‘pretty and cute’. In fact, there was barely a dry eye in the house.

As for Bella, she was very pleased with herself, comparing herself to Cinderella in her floor-length gown.

Afterwards there was a reception, where Bella remained in her waistcoat until pudding. The star of the show, she was then carried on to the dance floor by her many fans.

And how does she sum up the day? ‘It was perfect.’

Kneeling in a ring of teddies poised for a tea party, Bella seems surprisingly content with her lot.

Recalling her daughter’s grand entrance at the wedding, Natalie concludes: ‘It’s bittersweet because she still can’t walk by herself, of course. But Bella’s old enough to remember it — so regardless of what happens in the future, she’ll always have that wonderful memory.

No comments:

Post a Comment