A heartbroken Co Armagh family is mourning the loss of their “beautiful boy”, who passed away peacefully last week, aged just seven.
Teddy Johnson died in hospital in his parents’ arms, surrounded by those who loved him most.
In a heartfelt tribute, mum Jemma posted: “Our beautiful boy, Teddy, fell asleep for the last time peacefully in his mummy and daddy’s arms on Thursday, April 16 in hospital surrounded by those who loved him most.
“Teddy is the deeply loved son of Marvin and Jemma. Amazing little brother of Jean. Best friend of Evie.
“A precious grandson of Robert and Svenja, Jacqui and Brian, Ray and Dorene. A much loved nephew of Robyn, Ross and Sebastian and the best big cousin to Thomas.
“The family wish to express their heartfelt gratitude for the most amazing and loving care Teddy received from all the staff of Blossom Children’s Ward, the Metabolic Team in Belfast RBHSC and all those professionals who have contributed to Teddy’s care.
“You filled our arms for a while and our hearts forever xx”
Funeral arrangements will be announced in due course. The family has requested that the house remain strictly private.
Teddy had been living with Metachromatic Leukodystrophy (MLD), a rare, cruel and degenerative genetic disease which, crucially, is now treatable if detected at birth.
His story has already helped bring the issue of newborn screening to the floor of the House of Commons and to national attention.
In an emotional social media post in July 2025, Jemma spoke of her anger and heartbreak after the UK government against adding MLD to the routine newborn heel prick screening test.
“As many of you know, our beautiful son Teddy has MLD – a cruel, degenerative disease that is now treatable if caught at birth. But this week, the UK government said NO to adding MLD to the newborn heel prick screening test.”
The UK’s National Screening Committee recommended against adding it to the list of 10 rare conditions that newborns are screened for through the ‘heel prick’ test.
Jemma added: “They’ve said NO to giving babies a chance. They’ve said NO to preventing more families from going through the heartbreak we face every single day.
“Teddy was diagnosed too late because there was no screening. Because of that delay, he’s lost the ability to walk. He’s lost his speech. He’s lost the life he should have had…”
Teddy’s battle also prompted Upper Bann MP Carla Lockhart to raise his case in Parliament, where she appealed directly to the UK Government to add MLD to the newborn screening programme.
Speaking in Westminster in July 2025, Ms Lockhart said: “I spoke on behalf of a little boy from Upper Bann who can’t speak for himself, who can’t walk, and who struggles to even smile.
“MLD is one of the most cruel, degenerative diseases. It is rare, but treatable only if diagnosed before symptoms appear. Tragically, Teddy’s diagnosis came too late because there was, and still is, no newborn screening in place to detect MLD.”
Ms Lockhart urged the UK Government Health Minister to act to add MLD to the heel prick test every baby already receives.
“It’s a simple check that could mean the difference between life and unimaginable heartbreak,” she said. “Early detection opens the door to life-saving treatment. Without it, families are left facing the unimaginable.
“No parent should have to watch their child fade away knowing that a simple heel prick could have stopped it. We are not asking for a miracle – just a test.”
She also publicly thanked Jemma for turning her own heartbreak into a campaign for change.
“Thank you to Jemma Johnson for being Teddy’s voice and a voice for so many children whose futures could be saved by this simple test,” she said. “Her strength and commitment are both humbling and inspiring.”
The ArchAngel MLD Trust and other campaigners, clinicians and families continue to call for MLD to be added to the newborn screening panel, warning that more children risk missing out on life-changing treatment if action is not taken.
While the community now rallies around the Johnson family in their grief, Teddy’s legacy will live on in the ongoing fight to secure newborn screening for MLD.
