Our toddler was slow to walk: It was the first sign of a fatal condition that will leave him wheelchair-bound by 12, and unlikely to live past 30

The devastated parents of a toddler with a terminal condition that could rob him of the ability to walk, speak and eat by the age of 12 have pinned their last hopes on an experimental private therapy costing over £2million.Wilf Barker, two, was given the life-changing diagnosis of Duchenne muscular dystrophy (DMD) earlier this year - a progressive muscle wasting condition for which there is no cure. Most people with the disease will reach adulthood but they are more likely to die from heart or respiratory failure before or during their thirties, according to the NHS.Treatments that attempt to fix the mutated gene that triggers DMD are available in the US - although extensive human trials are currently underway to prove their effectiveness.'We’re desperate to do anything for our son, we couldn’t just sit here and do nothing,' said Wilf's father, Steve, 41, a commercial director. Along with Wilf's mother Amy, also 41, the pair have launched a fundraiser to help their son access the therapy. Speaking of the aftermath of Wilf's diagnosis, Steve described their situation as a 'ticking time bomb'. Wilf Baker was given the devastating diagnosis of terminal muscular dystrophy back in Feb'You almost bury your head in the sand to carry on, and it’s a weird situation because currently Wilf’s progressing – he’s walking, running and doing well at nursery.'But we know what’s going on in the background and what will eventually happen.'I think we’re still trying to process that, I’m not sure if we ever will. It feels like the situation is a ticking time bomb.'My mind is split between feeling hopeful and hopeless.' The first sign that something may be amiss with Wilf's development was his 'slight delay' when it came to sitting up, crawling and walking.By 18 months, in May 2025, he had still not started walking.According to the NHS, the average age for children to start walking is 14 months.'Doctors tell you not to compare your children to other children,' said Amy, a branch merchandiser. 'And part of us was putting it down to his personality.'We were trying to work out if he didn’t want to walk or he couldn’t walk.'Amy and Steve, who are based in West London, said they took him to the GP in June 2025, who referred him to a paediatrician.However, their son began walking at 21 months old - while the couple were on the waiting list for the specialist appointment. By the time they got to see the paediatrician at the end of the year, the parents were 'reassured' that it was 'just a bit of a delay', and perhaps a result of the toddler's flat feet and flexible ankles. The majority of children will be walking by 18 months, according to experts In September 2025, Amy suffered a miscarriage at eight weeks, and testing of the pregnancy tissue showed it had the genetic variant linked to Duchenne muscular dystrophy (DMD).Further testing in January showed Amy was a carrier for the condition.'Once we did some research, it raised a lot of alarm bells for us because there were a lot of symptoms we thought Wilf had,' she said.Steve added: 'You sort of hope for the best, but you’re starting to fear the worst.'The NHS says symptoms for DMD can include difficulties walking, running, jumping, climbing stairs and getting up from the floor.At their final paediatrician appointment in January 2026, Amy said she mentioned her results, and Wilf had a blood test to check his protein levels, followed by a full genetic blood test.He tested positive for DMD in February. It felt like the couple's world was 'falling apart'.In the weeks that followed, Steve said they were 'just going through the motions', trying to act normal around Wilf while 'falling apart behind the scenes'. Doctors have told Wilf's parents he will begin to lose the use of his muscles by the age of 8 Dad Steve, 41, says the family are trying not to 'fixate' on the futureThey had their first appointment with specialists at Great Ormond Street Hospital in March, when doctors revealed the brutal reality of the condition. 'They said he’ll continue progressing, but be behind his peers, until he gets to about age five or six,' Amy said. 'That’s when we’ll start seeing the decline.'They said at age four he’ll start taking steroids to try to slow down the progression of the disease, and he could be in a wheelchair by age 12.'He is being monitored every six months, but this will increase over time. The family are documenting their journey via Instagram, in hope of raising awareness of the disease.According to the NHS, people with DMD may also need a machine to help them breathe, and a gastrostomy tube to help with feeding.They can develop bladder and bowel problems, muscle weakness, scoliosis and dilated cardiomyopathy – where the muscle walls of the heart become stretched and thin.Day to day, Wilf is running around and 'enjoying life', and Steve and Amy are trying 'not to fixate' on the future.DMD is a genetic condition which causes progressive muscle weakness, and almost exclusively affects boys.It is caused by a variant in the X-linked DMD gene, and this leads to a lack of a protein called dystrophin.This causes muscle fibres to break down and be replaced by fibrous or fatty tissue in muscles across the whole body, leading to gradual deterioration of muscle strength.While it is the most common form of muscular dystrophy in children, it is rare, affecting only around 100 new boys every year - or 1 in every 3,500-5,000 live births.Most toddlers start walking by the time they reach 18-months-old, experts say. However, it is common for children under the age of three to tiptoe walk, as this helps them balance.By age three, a child should be able to jump, squat or stand, climb slides, pedal a tricycle and kick and throw a ball, according to the Institute of Health Visiting.