Parents of toddler diagnosed with Duchenne seek £2 million experimental treatment
Steve and Amy Barker are raising funds to pay for an experimental private therapy, costing over £2 million, for their two-year-old son Wilf, who has been diagnosed with Duchenne muscular dystrophy.
Wilf Barker, a two-year-old from West London, was diagnosed with Duchenne muscular dystrophy after a delayed walking milestone and subsequent genetic testing confirmed the X-linked disorder. The condition typically leads to loss of ambulation by age 12 and premature death in the thirties due to heart or respiratory failure. His parents, Steve and Amy Barker, have started a fundraising campaign to afford an experimental private therapy that costs over £2 million and is not offered by the NHS.
They are receiving specialist monitoring at Great Ormond Street Hospital, where doctors explained that steroids will be introduced around age four to slow progression, but muscle decline is expected to begin around five or six. The family documents Wilf’s daily life on Instagram to raise awareness and hopes the costly treatment might improve his outlook.
