Harrow Parents Fundraise for £2.4m US Gene Therapy for Son's DMD
Two-year-old Wilf Baker diagnosed with Duchenne Muscular Dystrophy faces progressive muscle weakness.
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Amy and Steve Baker, from west London, are seeking to raise £2.4 million for a gene therapy treatment in the United States for their two-year-old son, Wilf. Wilf was diagnosed in February 2026 with Duchenne Muscular Dystrophy (DMD), a genetic condition that leads to progressive muscle weakness. Doctors have indicated that Wilf could require a wheelchair by the age of 12.
Diagnosis and Condition
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The Baker family's journey began when Wilf showed delays in sitting and crawling, and had not started walking by 18 months old. After initial reassurances from medical professionals, Wilf took his first steps at 21 months. However, a miscarriage in September 2025 led to testing that revealed Amy Baker was a carrier for the genetic variant linked to DMD. Subsequent testing confirmed Wilf's diagnosis in February 2026. DMD affects muscle fibres throughout the body, leading to gradual deterioration of strength. According to the NHS, individuals with DMD are at higher risk of death from heart or respiratory failure in their 30s.
Steve Baker described the situation as a “ticking time bomb”, noting the contrast between Wilf's current active life and the known future progression of the disease. "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," Steve told PA Real Life.
Treatment and Fundraising
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The proposed gene therapy treatment in the US is intended to slow the progression of DMD. The estimated cost for this treatment is £2.4 million, excluding additional hospital and travel expenses. The Bakers have established a fundraiser, which has already gathered over £18,800. They expressed a strong desire to do everything possible for their son, stating, "We’re desperate to do anything for our son, we couldn’t just sit here and do nothing."
Medical advice suggests Wilf may begin taking corticosteroids around age four to help manage the disease's progression. The family is also focused on raising awareness about DMD, aiming to contribute to ongoing research and support other families facing similar challenges.
Questions this report answers
+What is Duchenne Muscular Dystrophy?
Duchenne Muscular Dystrophy (DMD) is a genetic condition that causes progressive muscle weakness. It affects muscle fibres throughout the body, leading to a gradual deterioration of strength. The NHS states that individuals with DMD are more likely to die from heart or respiratory failure before or during their 30s.
+How much is the gene therapy treatment costing?
The gene therapy treatment that Amy and Steve Baker are fundraising for in the US is estimated to cost £2.4 million. This figure does not include additional hospitalisation costs or travel expenses for the family.
+What are the predicted health outcomes for Wilf Baker?
Doctors predict that Wilf Baker, who was diagnosed with DMD in February 2026, could begin to lose mobility around age eight and may be in a wheelchair by age 12. The condition causes progressive muscle weakness and can lead to serious heart and breathing problems.
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