Deirdre & Billy Hempstead

On December 14th we welcomed our beautiful baby girl, Eliana Marie.  Just 13 days later we received a call from the pediatrician that changed our lives.

We were advised that her NYS newborn screening bloodwork came back that she has cystic fibrosis. Cystic fibrosis is a rare, progressive genetic disease that damages the lungs, pancreas, and other organs. In the following weeks we did additional testing, which confirmed Eliana’s diagnosis.

Since learning of her diagnosis we closely monitor Eliana’s health daily because even a simple cold could turn into something more for her. Eliana has monthly visits with the CF clinic which consist of meeting with a dedicated team of doctors. 

At 6 weeks old we were advised that Eliana has an insufficient pancreas. Therefore she needs to be given a pancreatic enzyme supplement called Creon prior to each time she eats anything. Since she obviously cannot swallow capsules, we have to open the capsule and spoon feed her the enzymes from inside the capsule mixed with apple sauce. Because her pancreas does not function as it should, the enzymes help to digest the nutrients in food that supply calories and improve the absorption of vital nutrients in order for Eliana to gain and maintain a healthy weight. 

Eliana receives at least 2 nebulizer treatments daily, followed by Chest physiotherapy (treatment that uses gravity and vibration to loosen mucus and thick fluids that can build up in the lungs)

In the lungs of people with CF mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications. It is also a top concern for people with CF to avoid germs.

CF patients must have a high sodium chloride diet due to producing 3x more salt in their sweat than a person without CF. Because she is still a baby who does not eat solid foods and is EBF. Eliana is given a bottle of pumped “salt milk” daily in order to supplement her salt intake.

Our goal is to be strong for our baby girl and provide her with the best possible care so she can live a healthy, happy, long life.

There is currently no cure for cystic fibrosis. By participating in Great Strides, I am helping to end this disease for thousands of people impacted by CF.

Cystic fibrosis affects the lungs, pancreas, and other organs. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues.  

The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.

Your support makes a difference.

By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found.