A mum has shared the incredibly moving moment her disabled 10-year-old daughter was able to take her first steps after her community raised £1,600 in just 72 hours for a special leg brace.
Born with spastic quadriplegic cerebral palsy, Tarli Staines has already endured four major hip operations and intense pain, and her courage has always inspired mum, Leonie.
The 33-year-old mother, from Lincoln, woke up in the early hours on 22 November, remembering a dream in which her daughter could walk.
She was so shaken by the dream that she wrote on Facebook: ‘I knew I was dreaming and I felt so angry, but I didn’t want it to end. I woke up crying and felt guilty – but it got me thinking. What if when Tarli dreams, she’s walking? Just breaks my heart.’
Supportive comments from family and friends flooded in and, by the next day, a GoFundMe page had been set up to raise money for a special brace that would enable Tarli to finally take those first steps.
Incredibly, the target was reached in just 72 hours, and soon after Leonie got to see her dream come true.
‘On 26 November, just four days after I’d put up the Facebook post, Tarli took her first steps wearing the brace,’ she says.
‘She sobbed and sobbed afterwards and said she had never been so happy in her life.
‘The kindness and generosity we’ve been shown has left me speechless. People will never know quite what they’ve done for us.
‘I’d accepted that Tarli wouldn’t walk, but now, thanks to the community, she has done. Now, I’m thinking about what else she may one day be able to do – and how do you even begin to say thank you for being given that hope?’
Born in July 2009 at just 30 weeks in a hospital in Germany, where the family then lived, Tarli weighed just 3lb 7oz .
‘I had gone into labour early, and doctors had tried everything to stop it progressing and give Tarli some time to grow stronger, but then she declined and really wasn’t doing well at all,’ explains Leonie.
The baby was whisked straight to the neonatal intensive care unit and put on a ventilator because she was struggling to breathe. She was so fragile that her mum only hugged her for the first time when she was eight days old.
Tarli remained in hospital for six weeks, gravely ill as she fought off sepsis and collapsed lungs.
‘We had none of our extended family out there, so we were in real emotional turmoil,’ says Leonie.
At six weeks old, the day before she was discharged, a brain scan revealed that Tarli had sustained some damage, after being deprived of oxygen during her birth.
At that point doctors could only be sure that it would affect her movement, balance and coordination.
‘Phoning home to break the news to family back in the UK was one of the hardest things I’ve ever had to do,’ says Leonie.
Tarli continued to struggle after being allowed home, particularly with feeding and sleeping.
Eventually, living in Germany became too difficult and, just after Christmas 2010, the family returned to the UK.
Taking her daughter straight to the GP, Leonie explained that she was not hitting her milestones, like crawling or sitting up and, within six weeks, she began a course of physiotherapy to help her build strength in her limbs.
Then, following further assessments at Lincoln County Hospital, she was diagnosed with spastic quadriplegic cerebral palsy just before her first birthday in summer 2010.
According to the NHS, cerebral palsy, of which there are four main types, is characterised by problems with movement, coordination and development, such as muscle spasms, weak limbs, random, uncontrolled movements and decreased muscle tone.
The form Tarli has affects both her arms and legs and means that her muscles are stiff and tight, making it difficult for her to move.
‘I don’t know how, but on some level, I think I knew that she had cerebral palsy,’ says Leonie. ‘I had done a lot of my own research and all the symptoms matched hers.
‘Doctors said she wouldn’t be able to walk or talk and would need lifelong care. It was really hard, hearing their expectations.
‘At first, things were really difficult. She would either cry or sleep. There was no real personality there and she seemed to be in pain all the time.
‘Then, at 14 months old, I was singing to her one day and she clapped her hands together, of her own accord. It was the first time she’d shown any coordinated movement, so it was a real breakthrough.
‘It was like she suddenly got it and she’s blown me away ever since.’
At three-and-a-half, she began talking and six months later, aged four, she taught herself to get around by commando crawling.
‘She’s the most positive, driven little girl I’ve ever met and she has gone above and beyond what anybody said she could do.
Despite her positivity, life has been tough for Tarli, and she has been through multiple hip operations.
‘The first time she had surgery, at just five, it was horrendous. Afterwards she had to wear a cast from her ankles to her ribs, and it was excruciating for her,’ says Leonie.
Despite the daily challenges she faces, she continues to wow both her family and medical professionals with her progress.
‘When Tarli tries to bear weight on her legs normally, she collapses,’ says Leonie. ‘She had also never stood up on her own before – but in the suit, she did just that.
‘She also took her first steps. She had to be supported, but it was still such a huge moment. Now, she is raring to go. She knows she needs to work hard, but she just wants to see what else she can do.
‘People always tell me I’m strong for what I’m dealing with, but the truth is Tarli has taught me to be. She’s the strong one – I’m just following her lead.’
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