Hudson's Heroes

Our Great Strides Story

Hi! I am Hudson’s mama! My sweet boy was born in November..happy and “healthy” or so we thought. We brought him home, everything was going well..adjusting to life as a family of 4! 

At two weeks old we received a phone call from our Pediatrician. “Hey..does Cystic Fibrosis run in your family?” No…I don’t even know what that is! She proceeded to tell me that Hudson tested positive for CF on his newborn screening. She went on to explain that it didn’t mean he for sure had CF, but that one mutation was identified and you need to have two mutations to actually have CF. If he only has one mutation then he would just be a carrier, but that more testing is required as the newborn screening doesn’t test for all mutations. I quickly put our pediatrician on speaker and started googling Cystic Fibrosis and the first thing I read is INHERITED LIFE-THREATENING DISORDER. My heart sank…this is my newborn son we are talking about. 

Needless to say, we were referred to Children’s to have a sweat test done to determine if he truly had Cystic Fibrosis or if he was just a carrier. 

My mind was racing, yet I kept thinking okay my daughter never tested positive for anything on her newborn screening. What are the chances that both my husband and I are carriers of a CF mutation and never knew. Even if we both were carriers he would only have a 25% chance of having CF. There is no way he has it! 

Well… after a positive sweat test, two mutations found by genetic testing, and additional testing indicating that Hudson is pancreatic insufficient (between 85 to 90% of individuals with CF have pancreatic insufficiency), here we are.

My husband and I then had genetic testing done to determine if we were carriers of the two mutations that were found in Hudson. 

When two CF carriers have children, there is a 25% chance that the child will not receive either mutation and be completely unaffected, 50% chance of being a carrier and 25% chance of having CF. 

With that being said, we then had our daughter tested to determine any potential risks for her future family planning. 

Well my children are both incredibly special as they are both the 25%. 

My son who is the 25% that has CF and my daughter who is the 25% that didn’t receive either mutation from my husband or I and is not even a carrier. 

At this time, Hudson has to take Pancreatic Enzymes before all meals/snacks (currently 20+ pills a day), additional vitamin supplements and salt. He has normal wellness visits with his Pediatrician and has monthly appointments with his Pediatric Pulmonologist. As he gets a little bit older, there will be more Airway Clearance treatments, medications, etc.

We are still learning what this diagnosis will mean and look like for our sweet boy…early intervention is key.

People with CF are living longer and more fulfilling lives, thanks to specialized CF care and a range of treatment options.

But that’s just it…treatment options…there is no cure at this time and that is why we are participating in Great Strides. We are committed to helping advance a cure for Cystic Fibrosis.

Thank you for all of your love, support and donations to the Cystic Fibrosis Foundation. Our family and Hudson will be forever grateful!

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We walk for a cure for all people with cystic fibrosis. By joining our team, you can help us end this disease!

To become a team member, click the “join this team” button. Once you register, it’s easy to donate and start fundraising.

Our team is determined to ensure that every person with CF can live a long, healthy life, without the limitations caused by their disease. We can’t wait for you to join us.