A three-year-old boy with an extremely rare genetic condition has taken his first steps using a revolutionary robotic walking system, thanks to a groundbreaking trial in Wales. Luca Povey, from Neath, is the only child in Wales with Tuba 1A, a condition that causes brain abnormalities, seizures, movement disorders, speech and language difficulties, and vision problems.
Luca, who is non-verbal and cannot sit or walk independently, was fitted with a £50,000 robotic walking system during a five-day trial in August. By day five, he was upright, opening his eyes, and completing around 3,000 steps. His mother, Annalee Povey, described the experience as "life-changing" and said the family had "tears of happiness just from seeing him upright and seeing the smile on his face."
A Rare Condition and a Difficult Diagnosis
When Annalee and her husband Mark went for their 20-week scan, doctors noticed a tiny bit more fluid than normal. Although not hugely concerned, Annalee pushed for all possible genetic testing. Tests initially came back clear, but at 37 weeks pregnant, she was told her baby had the condition.
Doctors said Luca would likely deteriorate between the ages of four and six and gave him a maximum life expectancy of 10 years. "It was heart wrenching," Annalee recalled. "I cried in the meeting and me and my husband couldn't speak about it to begin with."
The rarity of the condition became clear when the family was given just one leaflet after Luca was born, and a nurse admitted she had to Google it. Annalee said, "It wasn't much of a reassurance."
Health Improvements After the Trial
Luca, described by his parents as a "bubbly and smiley" little boy, also suffers from lissencephaly, microcephaly, quadriplegic cerebral palsy, complex epilepsy, and cortical visual impairment. He attends Ysgol Maes y Coed, a specialised school, and has received private physiotherapy at Equinox in Cross Hands, Carmarthenshire, since he was 18 months old.
The trial, which marked the first time Canadian company Trexo Robotics brought their technology to the UK, has had a longer-term impact on Luca's health. In the six to eight weeks since the trial, he has had fewer seizures, not relied on his suction machine, and hasn't suffered from a single chest infection. Annalee said, "We can't outright say it's the reason he's been healthier but we know it's played a part... It's been a miracle and a godsend to Luca that we didn't know existed."
Determined to Fund the Technology
The family now hopes to secure their own Trexo walking system, which costs £54,000. Annalee conceded this was a "hefty" price tag but said, "We're determined now to get this no matter what."
The parents already face a substantial financial burden from private physiotherapy, which they fund themselves alongside monthly NHS sessions. Annalee said, "I don't know when I last bought myself a pair of leggings. It's a significant cost and a financial burden but I'll give every penny I can to make sure all the children have what they need."
The family has launched a fundraiser to help cover the cost of the device.
