Family of eight-year-old Leeds girl with rare motor neuron disorder raising £100k for surgery which could change her life
A family of Leeds United supporters have launched a fundraising campaign to get life-changing treatment for their daughter, who suffers with a rare motor neuron disorder.
Eight-year-old Amelie Round was diagnosed with Hereditary Spastic Paraplegia (HSP) four years ago, a lifelong and progressive condition which affects less than 0.1 per cent of the population.
The crippling disorder affects the message pathways from Amelie's brain, causing her muscles to tighten and overwork.
It means the smallest movements cause pain and Amelie is unable to walk unaided, using a walking frame, sticks, an adapted bike and a specialised buggy for longer distances.
Her parents, Rose Moore and Jay Round, are raising money for Amelie to receive pioneering treatment in the US which could change her life and ease many of her symptoms.
Donations have already flooded in for the family, who live near Wetherby, as Whites' supporters and generous strangers back their GoFundMe campaign.
“Amelie a beautiful, brave and happy little girl," Rose, 37, told the Yorkshire Evening Post.
“She’s such a smiley child, very sociable and she finds happiness in the smallest things.
“But despite her smiles she can barely walk, she lives with pain and struggles with almost every aspect of life.”
Amelie can fall over up to 10 times a day, leaving her with bruises, grazes and cuts, and her movement will become severely limited as her condition worsens.
“It’s horrible to see her struggle and it’s non-stop," Jay, 39, said.
"Every single step is like jeopardy - it’s 24/7 and when you do get downtime, you end up googling medical research journals for health stuff."
Rose added: "It’s exhausting on all fronts, she needs so much help and attention.
"You always have to be aware of what she’s doing all the time, because she’s such a danger to herself and can be for her little sister - she could pull her over.
“Then it’s also emotionally exhausting. We’re helping her to do things, but behind that there’s a sadness for what she can’t do.”
Amelie is not eligible for Selective Dorsal Rhizotomy (SDR) surgery in the UK, but doctors at St Louis Children's Hospital are confident the operation will change her life for the better.
Rose and Jay are hoping to raise £100,000 to cover the cost of the surgery and accommodation for eight weeks, as well as intensive specialist physio which she will need for at least 18 months following the operation.
The surgery could ease or significantly reduce the tightness in her body, which has left Amelie's muscles in her lower body partially paralysed.
Jay said: “We’ve seen videos of kids that have had this procedure and for some children it’s amazing post-op - they’ll be able to walk or might be playing sport, which would be unbelievable.”
“Whatever happens it will ease the tightness in her body and take away the pain from that," Rose added.
"It means the energy she’s using tightening her body and overcoming that can be spent elsewhere, so she should be able to gain strength and that will help her cognitively.
“It should allow her body to readdress that energy balance and improve in other areas.
"The surgery could potentially transform her life.”
More than £36,000 has already been raised towards Amelie's treatment and her family have plans for fundraising events in the New Year.
This includes a version of a triathlon that Amelie can take part in, using her adaptive bike and swimming using her aids, as well as raffles and a dance-a-thon.
Rose said: “She absolutely loves to dance in her own way, while she’s seated or supported.
"Her sister and friends love to dance too, so we thought that would be a lovely way to bring people together.”
The family have been flooded with messages of support since launching their fundraising campaign as donations pour in from hundreds of generous strangers.
“The support has been unbelievable," Jay added.
"It’s amazing how generous people are, we’re overwhelmed and so appreciate the help we've had. We can’t thank people enough."
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