Portadown Parents Demand Newborn Heel Prick Test Expansion After Son Teddy Johnson Dies

Jemma and Marvin Johnson from Portadown are scheduled to meet with politicians in London on Tuesday, advocating for the inclusion of Metachromatic Leukodystrophy (MLD) in the routine newborn heel prick screening programme. Their son, Teddy, passed away on 16 April from the rare degenerative disease, having been diagnosed at 18 months old when treatment was no longer viable due to symptom progression.

The Critical Window for MLD Treatment

MLD, affecting approximately one in 40,000 births, leads to a progressive decline in physical and mental capabilities. Treatments, including a gene therapy approved in the UK in 2022, are effective only if administered before the onset of symptoms. The Johnsons noted Teddy showed no early signs, developing a limp at 17 months, which rapidly worsened.

Professor Simon Jones, an expert in inherited metabolic diseases, highlighted the disparity: “Since the approval of the new drug, there have been 40 additional children diagnosed with MLD in the UK but they have only been able to treat eight.” He added, “The other children, despite us having this amazing and innovative therapy, we have had to send them home essentially to die like Teddy. This is unacceptable to us.”

Government and Political Stance

Earlier this year, the UK National Screening Committee (NSC) advised against adding MLD to the existing newborn screening panel, citing uncertainties regarding test accuracy and long-term treatment outcomes. However, the Department for Health and Social Care now states the NSC is considering a new evaluation to gather more evidence on routine newborn screening for MLD.

DUP MP Carla Lockhart has publicly urged the prime minister to reconsider early testing, pointing out the minimal cost of around 17 pence per child for the additional screening. Labour leader Sir Keir Starmer has also pledged to re-examine the inclusion of MLD in newborn screening, acknowledging that the UK lags behind other nations on this issue.

The Johnsons aim to impress upon health leaders that Teddy’s death was preventable. “We are campaigning for other parents to give them the opportunity to save their children,” Marvin Johnson stated, emphasising, “Children are dying because of it.”