💜May is cystic fibrosis month and we are getting so close! 💜

“The newborn screening is back-Asher does have cystic fibrosis”. A sentence that although at that point Sam and I had prepared ourselves for because of the presentation and suspicion, it did not soften the blow any less. As new parents, there is nothing in the world that can prepare you to hear that your precious baby will endure anything other than a normal life. Since that day we have educated ourselves and our family so that we can make sure we can provide the best life possible for our sweet baby boy. 

Cystic fibrosis is a progressive, chronic, autosomal recessive disease that affects many organs in the body-primarily the lungs and pancreas. It means that a person has inherited two copies of the abnormal CF gene and both parents must have at least one copy of the abnormal gene. So, yes, both parents must be carriers and Sam nor myself knew that we carried this gene. Children of parents who are carriers have a 25% chance of having CF.  This is why it is such a rare disease with there only being about 40,000 people diagnosed in the US. There are thousands of CF mutations and asher has two different ones-one being more common (Delta F508) and one being more rare (Q493X). 

Yes, Cystic fibrosis is known for being potentially life threatening or life shortening but in recent years they have made amazing advances in medicine and treatment, early diagnosis and access to resources. The majority of funding comes from donations made to the cystic fibrosis foundation. They now have medications that have allowed most people diagnosed with CF to be able to live almost completely normal lives. They are getting closer every single day to a cure and it fills my heart with so much hope to think that my son may see this happen in his lifetime. 

Asher has been a patient at the UVA pediatric respiratory medicine hospital since he was discharged from the NICU. He sees pulmonology/ GI, a nutritionist and a liver specialist. They have closely followed his care and have done everything possible to ensure that he is thriving-and that’s exactly what he is doing! 

On May 3rd we will be walking in The Great Strides Roanoke walk and we are welcoming anyone who wants to donate to help finding a cure or join our team to support Asher. Every donation helps in giving these special people more tomorrows. My prayer is for Asher to have many decades to live his life to the fullest.  🫶🏼💜🎗️#ashersarmy