A six-year-old girl told she may never walk due to a rare condition has achieved her ultimate goal – of walking her little sister in to school on her first day.
Amelia-Rose Walton was born with Level Four Hereditary Spastic Paraplegia (HST) – a rare, degenerative disorder, characterised by impaired walking due to spasticity and weakness of the legs.
The condition, which mimics the physical features of cerebral palsy, meant Amelia-Rose could only walk with the assistance of a frame, and was mostly restricted to a wheelchair.
But over the course of just six months last year, a fundraising bid by Amelia’s family raised a whopping £100,000 – to get Amelia to the USA for pioneering surgery to improve her muscle stiffness.
The surgery was carried out in August 2019 – and with the help of almost-daily physiotherapy, Amelia has been going from strength to strength ever since.
And this week the youngster, from Bishop’s Cleeve, Glos., was delighted to walk beside her younger sister Chloe, five, as Chloe started her very first day of school.
It was a goal that Amelia-Rose had set herself as soon as she had had her surgery last year – and left her proud parents Tanya Cross-Walton, 41, and Ben Walton, 37, feeling emotional.
Accountant Ben said: “It was really, really nice to see that.
“Chloe has just started reception, and Amelia has gone into Year 2, and said she remembers what that first day of school feels like.
“She really wanted to be able to walk in beside Chloe, holding her little sister’s hand.
“It was something that we really didn’t think was going to happen when we first went into lockdown, and Amelia couldn’t go to her physiotherapy appointments anymore.
“But we’ve still had physio appointments over video call this whole time, and Amelia has been so determined, and is always doing practice stretches in her room.
“She just pulled it out of the bag on Monday when she and Chloe walked into school.”
Ben added that Amelia-Rose’s friends, whom she had not seen for months due to lockdown, were also “amazed” to see her walking.
He said: “Some of her friends saw her walking in just holding Chloe’s hand, and they said, ‘Amelia, you’re walking!’. They were amazed.
“I think at one point she nearly fell over, but she managed to save herself – which is great progress in itself.
“Before her operation, she had zero balance. Her knee wouldn’t bend, and she had to have either her walker to hold on to, or a person on each side of her holding her hands.
“Otherwise she would just be on the floor.
“What the operation has done for her is just amazing. It has given her her independence back.
“Now she can stand for well over two minutes by herself, and we’re nearly at the stage where she can take a few steps completely unaided, too.
“She still uses her sticks most of the time for walking, but now she can also walk along just holding one of our hands – which has been really emotional for us to see.”
Amelia and her family had to fly to St Louis, Missouri, last summer, for Amelia to undergo selective dorsal rhizotomy, an operation to improve muscle stiffness.
Ben and Tanya were left “at our wits’ end” after being told Amelia-Rose was not eligible for treatment with the NHS – because brain scans do not show signs of the condition.
Ben threw himself into three separate 100 kilometre walks in various parts of the UK last spring to help with the family’s fundraising efforts.
And thanks to hundreds of kind donors, over £100,000 was raised for Amelia’s treatment – and the subsequent, ongoing physiotherapy.
Ben said: “Amelia has been so determined. She’s really wanted to do as many physio sessions as possible, and is always practicing.
“Sometimes I think she’s off playing in her bedroom, and I’ll walk in and she’s actually practicing stretches up against her bedroom wall.
“She really wants to catch up with her friends.
“Chloe has also loved having her sister being able to walk alongside her. She really helps Amelia out lots, she just wants Amelia to be able to join in and walk with her.”