Zay was diagnosed with failure to thrive at 16 months old after having trouble transitioning to solid food. Although he had signs of breathing difficulties, this eating problem seemed far more consequential, so he did not see a pulmonologist for several months, and it wasn’t until the third doctor that he was diagnosed with with Neuroendocrine Cell Hyperplasia of Infancy at 20 months. He spent 6 weeks in a hospital learning to eat, but when he finally began eating normal quantities of food, he began vomiting. This led to a fundoplication surgery that didn’t work and only resolved after he trained himself to hold down food. He also needed supplemental oxygen to breathe at nights and during trips until he was 6. He now doesn’t use oxygen at all, but still has trouble eating. Doctors have been unable to explain why some kids with NEHI have digestion problems. 

NEHI is an interstitial lung disease that keeps the alveoli in the lungs from functioning properly. Air is “trapped” there even as the patient is trying to inhale. It was only described in 2005. Zay was born in 2006. That's why it took a long time for a diagnosis.The only treatment is supplemental oxygen and giving more calories to make up for eating problems.

Due to the fact that Covid-19 is a respiratory illness, we have been in a very strict quarantine where we rarely leave the house for supplies and the occasional hike. We have not been able to have face to face interactions with anybody.

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Because NEHI is such a rare disease having enough funding for research can be challenging. We would appreciate your supporting the NEHI Research Foundation since Zay has ongoing issues and we would like to find any help for him we can find. We also want to help make the journey for other kids easier. 

NEHI Research Foundation is excited to announce that it has been selected to participate in Penn Orphan Disease Center’s 7th Annual Million Dollar Bike Ride taking place on June 13th, 2020! This is an incredible opportunity for the foundation and its community to raise awareness and fund meaningful research. Learn more about the event at: www.milliondollarbikeride.org

What is it?

This will be the Penn Orphan Disease Center’s (ODC) 7th Annual Million Dollar Bike Ride. While the ODC is dedicated year-round to supporting rare disease this is a once a year opportunity for rare disease groups to work directly with them on their mission. The event normally takes place in Philadelphia, PA but due to the COVID-19 pandemic they will be conducting the event as a virtual ride. Riders will ride in their own communities on Saturday, June 13th to support their respective rare disease groups!

​Why is it important?

As a selected foundation not only will we get to ride in the race and raise awareness for NEHI we will get to partner with the ODC to put out a pilot grant. The ODC will match up to $30,000 for each individual team participating. Not only that, they put out the call for applications internationally then use their in-house scientific advisory board to award the one with the highest scientific merit. The NEHI Research Foundation will set the parameters for what we’d like to support but the ODC does all the work for us. This means that every donation that is made (up to $30,000) will be matched dollar-for-dollar and will be directed to the grant to be issued by Million Dollar Bike Ride. Help support NEHI Research Foundation today and have your contribution go twice as far!