Imagine going through each day short of breath; feeling as if you had just walked up a few flight of stairs and you are trying to catch your breath by breathing through a straw. For NEHI patients, each time they exhale, they struggle to completely release all the air from their lungs; so then when they try to inhale, they can't take in as much new air as a normal child. They work so much harder to breathe that you can often see them breathing more rapidly and using extra muscles in their neck, chest and abdomen to move air in and out of their lungs.
While some of these kids are misdiagnosed with atypical asthma, NEHI is not asthma. Most NEHI patients do not respond to asthma medications and most NEHI patients use oxygen for some time. Thankfully, most grow out of the need for oxygen supplementation in childhood. While they grow out of the worst of the symptoms, their lungs will never be 100% normal and most will have some lasting effects of NEHI. Very little is known about what causes NEHI or what the future holds for patients with this diagnosis. There are no FDA approved treatments to treat NEHI, and there has been no federal support to study NEHI in these kids. We need your help to understand this disease!
Help us raise $100,000 for Neuroendocrine Hyperplasia of Infancy (NEHI) Programming! All donations to this page are 100% tax deductible.
Disclaimer: Any funds donated in support of a patient or their family cannot be used to fund direct medical costs or be given to the family to cover medical or other expenses. It will be used to support the efforts in that patient’s diagnosis to benefit all children that share that diagnosis. For every dollar that is donated here, 70% will go directly to disease specific NEHI programming that aligns with our mission to accelerate research to cure all forms of Children’s Interstitial and Diffuse Lung Disease (chILD) and to provide compassionate support, education, and hope to children and families affected by these life-altering diseases. The remaining portion will go into the general fund to be used where it is most needed.