My Great Strides Story
Emily Mace
Fundraising for Point Pleasant Beach Great Strides 2026
Emily Mace
When Jameson was born as far as we knew he was just a carrier of the cf gene just like me and justin are.
He also had to have a sweat test done which determines if you have cf or not and that came back as a high "normal" result.
His first few months of life were hard .. he was only 8 pounds at 3 months old , throwing up constantly , just not thriving.
We had taken him to jersey shore to be looked and was admitted for failure to thrive.
After a few days of being there he was diagnosed with a thyroid issue , and he was seen by the most amazing pulmonologist who had just thrown out there that he wanted him to be checked to see which cf gene he actually had , and with that it came back that he had (2)
F508del & G542X which are considered severe CF.
Cf affects his lungs ,liver ,intestines , sinuses & he's pancreatic insufficient
We try to keep Jameson as healthy as possible and let him live a normal life but there are things he can't do.
People look at him and just think eh it's not that serious but if he gets a cold it's not just a cold like you or I get, a cold for him means extra breathing treatments, extra vest time , sometimes oral steroids & 90% of the time he's put on antibiotics.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward - a cure for everyone with CF.
Comments