We’re taking on Leeds Marathon to raise money and awareness for NEHI.

NEHI is a rare respiratory disorder that was first classified in 2005 and is part of a sub-group of Childhood Interstitial Lung Disease's (ChILD).

We’ll be running Leeds Marathon on Sunday 11th May for NEHI, a charity dedicated to supporting research into this rare and little-understood condition. This is a cause that’s especially close to our hearts, as our gorgeous niece, Ella, was born with this condition in 2023.

Currently, the cause of NEHI remains unclear. Clinical research suggests that NEHI is due to restriction of the distal airways leading to air trapping in the lungs. However, the mechanism of this is poorly understood.

Children with NEHI present with common but challenging clinical features that are often misdiagnosed as more common lung diseases. These features include: respiratory distress, low levels of oxygen in the blood, failure to thrive, retractions, and a crackling sound upon inhalation observed with a stethoscope. Diagnosis is usually from clinical observation, CT scan (NEHI does have very specific imaging presentation), and in some cases lung biopsy.

NEHI is poorly understood and under-researched.

Any help will be greatly appreciated to help get us across the line on the big day! Thank you.