Luca Arnold took 3,000 steps in a day this August, strapped into a robotic walking frame at a clinic in Cross Hands. He is three, he cannot walk on his own, and his parents say he was healthier in the weeks afterwards than they had seen him in a long time.
Now the family from Neath want one of the machines at home, and they say time is against them. A Trexo costs about £54,000, it is not available on the NHS, the families raising for it say, and doctors have told Luca’s parents his condition is expected to start getting worse when he is between four and six.
The only child in Wales
Luca has a change in a gene called TUBA1A, which affects how the brain forms. It has left him with lissencephaly, a condition in which the surface of the brain is unusually smooth, along with quadriplegic cerebral palsy, severe epilepsy, impaired vision and a swallow that is not safe. He is non-verbal.
When he was diagnosed, his mum Annalee says, the genetics team told the family he was the only known case in Wales. Her own research puts the number of cases worldwide at somewhere between 350 and 600.
“Because it is so rare, there is no standard blueprint for his care,” she wrote on the family’s fundraising page, “and time is our greatest enemy.”
What the doctors have told them
Annalee and her husband Mark have chosen to be open about what they have been told. At diagnosis, she says, genetics put Luca’s life expectancy at potentially around ten years, “although they stressed that nobody can know exactly how long he will live”. More recently the family have been told he is expected to start deteriorating between the ages of four and six.
His epilepsy has already become more severe since he was two and a half, she says, and he has had hospital stays including time in a high dependency unit. As she wrote to us this week, he was back on antibiotics with a chest infection.
“This is why, now that Luca is three, we feel that time really is against us,” she said. “We want to give him every opportunity to be upright, active and as healthy as possible while we can.”
3,000 steps in Cross Hands
The Trexo is a pair of motorised legs that bolt onto a child’s walking frame and move the hips and knees through the motion of walking. Luca tried one during a five-day intensive at Equinox Physiotherapy in Cross Hands, the clinic that hosted the device’s UK launch in August, and S4C’s Heno filmed him in it.
“During that time, he was able to be upright and supported in a way that made a noticeable difference to him,” Annalee said. “He was also much healthier during the period following the intensive, which has made us even more determined to raise the money for his own Trexo.”
Since then, she says, he has taken his first steps in a Rifton pacer at his weekly private physio, started playing alongside other children, and trialled an adapted tricycle the family also want to buy. A supplier’s quote she shared with us prices the trike at £3,828 before VAT.
For Luca’s family, the milestones are things other parents might not notice. He can now kick and move his legs more, hold a toy up high, play with his hair and try to lift himself up.
His paediatrician has stressed the importance of keeping his chest upright and positioning him well, Annalee says, and the family believe keeping him moving and supported could help his health and, they hope, his life. “For us, the Trexo is about much more than helping him walk,” she said.
Both parents gave up work
Annalee and Mark have both given up work to care for Luca, who attends Ysgol Maes y Coed in Neath. The private physiotherapy and hydrotherapy they credit with keeping his lungs clearer has been paid for by the family, she says, with no other financial support.
Their GoFundMe was set up with an initial target of £9,000 and had raised £280 from eight donations by Tuesday. Luca is the third child in south west Wales in six weeks whose family is raising for a Trexo, after Teddy Gorman from Winch Wen last week; his family put the price at £49,999.
The fundraiser is at Qube in Briton Ferry on Sunday 27 September, from 1pm to 4pm, with face painting, sweets, music from Mad Jay DJ and Stitch appearing for photographs from 2pm. The bar is open and bucket donations are welcome. Donations can also be made at gofund.me/169b80661.
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