Wilf Baker, a two-year-old from west London, is currently “walking, running and doing well at nursery,” but his parents know this won’t last. He has been diagnosed with Duchenne muscular dystrophy (DMD), a progressive genetic condition that could confine him to a wheelchair by age 12 and can lead to serious heart, breathing, and feeding complications. His parents described the situation as a “ticking time bomb.”
Diagnosis after early delays
Amy and Steve Baker, both 41, noticed their son was “slightly delayed” in sitting and crawling. By 18 months, in May 2025, Wilf had not yet taken his first steps. The couple took him to their GP in June 2025 and later to a paediatrician and physiotherapist, who initially reassured them there was “nothing to worry about.” Wilf eventually began walking at 21 months, in August 2025.
In September 2025, Amy suffered a miscarriage at eight weeks. Testing of the pregnancy tissue revealed it carried the genetic variant linked to DMD. Further testing in January confirmed Amy is a carrier. Wilf was tested and diagnosed with DMD in February 2026, with doctors warning he could start losing mobility from age eight.
What the NHS says about DMD
According to the NHS, DMD symptoms can include difficulty walking, running, jumping, climbing stairs, and getting up from the floor. While most people with DMD reach adulthood, they are at greater risk of dying from heart or respiratory failure before or during their 30s. The condition is triggered by a variant in the X-linked DMD gene, leading to a deficiency of the protein dystrophin, which causes muscle fibres to deteriorate and be replaced by fibrous or fatty tissue.
At their final paediatrician appointment in January 2026, Amy raised her carrier results. Wilf underwent a blood test and a comprehensive genetic test, which confirmed DMD in February. Amy said it “felt like our world was falling apart.” No other family members are known to have the condition.
Family’s fundraising effort
At their first Great Ormond Street Hospital appointment in March, doctors explained that Wilf would continue progressing but fall behind his peers until about age five or six, when decline would begin. They said he would start corticosteroids at age four to slow progression, and he could be in a wheelchair by age 12. Wilf is currently monitored every six months.
The couple have explored private gene therapy options worldwide, including a treatment in the US costing £2.4 million ($3.2 million), excluding hospital and travel costs. Their fundraiser has so far collected more than £18,800. Amy said: “We just want to do everything we possibly can for him and I don’t want to look back, or more importantly him look back, and think we could have done more.” Steve added: “We’re desperate to do anything for our son, we couldn’t just sit here and do nothing.”
