Suffolk mother wants to raise awareness of son’s rare condition

When Jakob was born with a single crease on both of his palms, the midwife warned his mother this could indicate a health condition.

Lucy remembered she was told to “just bear in mind that could mean something” following her son’s birth nine years ago.

She said it still came as a shock, however, when Jakob was diagnosed last year with Mucopolysaccharidosis type VII (MPS VII) – a condition that the NHS said on average one baby every 10 years is born with in the UK.

The 36-year-old mother from Dennington, near Framlingham, Suffolk, has been keen to share the reality of parenting a child living with this life-limiting condition, to raise awareness and help others going through a similar experience.