A three-year-old girl given a zero percent chance of walking unaided is now able to ride a bike – and it’s all thanks to the dedication of her parents.
Sophia Marshall was born with Sacral Agenesis, a rare birth defect that affects the foetal development of the lower spine.
Those with the condition are usually unable to walk and must either use a wheelchair or have a double leg amputation to increase mobility with prosthetics.
But Sophia’s parents, Chantelle and Samuel, were determined to carry out a daily plan of physiotherapy at home to strengthen Sophia’s legs.
Thanks to their perseverance, Sophia took her first steps last October. Just nine months ago she began to ride her bike.
Full-time mum Chantelle said: ‘Sophia is such a little fighter, from battling through her congenital heart defects to doctors to realise she then had part of her spine, it really has been bad news after bad news.
‘I researched Sacral Agenesis and I could only find stories about people who were wheelchair-bound or had undergone double leg amputations.
‘I was terrified that Sophia would never be able to walk unaided but we refused to give up hope.
‘We had to give Sophia the best chance at walking so we decided to do everything we could to strengthen her legs.
‘It wasn’t easy but she’d fought through five heart surgeries as a baby to try and correct her heart so we knew she’d be able to face this next hurdle.
‘I was so proud when she took her first steps last October but we were thrilled when she started doing it unaided.
‘Specialists at Birmingham Children’s Hospital have told us that they’ve never seen anyone with Sacral Agenesis do that before, which makes us feel so lucky.
‘Earlier this year we bought her a bike and now she’s even riding that now, she’s amazing.’
Sophia was diagnosed with Sacral Agenesis at just seven weeks old having just survived a cardiac arrest and heart surgery.
She was born with 11 different heart defects: CAVSD (complete atrioventricular Septal Defect), right bundle branch block, left atrial isomerism, three holes in the heart, a severely leaky aortic valve, interrupted IVC, bilateral SVC, coarctation of the aorta, and a slow left pumping chamber.
Just as the first-time parents were getting to grips with Sophia’s heart problems they were told that her spinal condition would likely mean she would never sit up, crawl, or walk unaided.
Chantelle said: ‘Our main focus when she was a baby was ensuring that her heart worked properly.
‘She had a cardiac arrest at two days old in Samuel’s arms and from there it was a rollercoaster.
‘To being told that she would need palliative care after corrective surgery failed to undergoing a second operation and it being a success, it has been three years of ups and downs.
‘She will need further heart surgery when she’s older but for now, she’s classed as ‘stable.’
‘It wasn’t until she was seven weeks old that we realised she had three missing vertebrae in her sacrum.
‘We also found out that Sophia’s spinal cord ended halfway down her back, as opposed to the bottom of her spine, like most others.’
Now that Sophia has beat the odds and walked on her own, Chantelle and Samuel remain hopeful for the future.
‘Her diagnosis was a huge shock as we’d focused so heavily on her heart conditions but we’ve always refused to believe that she’d need her legs amputated,’ said Chantelle.,
‘I’m so thrilled that she’s riding a bike unaided, we got her the bike for her second Christmas, as parents it was always our dream to buy her one and it has been such a proud time as she learns to use it this year.
‘I hope our story gives other parents hope as we’ve been through it all but now we’re stronger than ever and have defied all the odds.’
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