Facebook Fundraiser Established For Syracuse Man With Cystic Fibrosis
SYRACUSE — A Facebook fundraiser has been recently established for a Syracuse man with cystic fibrosis.
Haiden Morgan is a 29-year-old orthopedic machinist at Zimmer Biomet who enjoys playing music, as well as studying medicine and physics. However, he’s spent approximately three years of his adult life in hospitals.
“I’ve lost quite a few jobs because of this,” said Morgan. “But I’ve spent a lot of time learning about my disease, and studying academia about it really keeps me hopeful.”
Cystic fibrosis is a genetic disease that results in persistent lung infections, limiting one’s ability to breathe over time. Mutations in the cystic fibrosis transmembrane conductance regulator cause a protein to become dysfunctional. When the protein doesn’t work correctly, it cannot help move chloride to the cell surface. This results in mucus within several organs to become very thick and sticky.
“I’ve always had a lot of trouble breathing,” said Morgan. “When it came to figuring out what was wrong with me initially, everyone seemed to be at a loss.”
He recalled being taken onto a lake for his “last boat ride” as a child, saying he “was sent home to die.” However, while out on the lake, a chance encounter with a family friend and a nurse led to his diagnosis by Fort Wayne nurses with cystic fibrosis.
“It was very much one of those ‘right place, right time’ scenarios,” said Morgan.
There are two types of bacteria in Morgan’s lungs that are resistant to any form of treatment. He also suffers from diabetes, chronic obstructive pulmonary disease and generalized anxiety disorder. There is also very strict protocol in place for those with cystic fibrosis. To avoid cross-contamination, people with CF cannot meet each other as they carry bacteria that could be harmful to one another.
“I went through this alone until social media came along,” said Morgan. “It caused depression and anxiety in my teens. You’re born with it and you live with it.”
Trikafta, a new triple combination therapy for patients 12 years and older with cystic fibrosis, was recently approved by the U.S. Food and Drug Administration. Morgan said he’s “holding his breath on this, but I’m really hoping the best happens.”
Morgan is currently hospitalized, but hopes to be released in a week or two.
“If we can get cystic fibrosis cured, that opens a lot of doors to curing other genetic diseases,” said Morgan. “It’s hard to recognize people with the disease because you look younger than you are.”
Even though he’s employed with Zimmer Biomet, Morgan fears losing his job due to the amount of time he’s spent in the hospital.
“It’s been like that my whole life,” said Morgan. “Things go well, then I get an infection.”
With his Facebook fundraiser, Morgan is raising funds to help purchase various medical equipment, including a portable backpack oxygen concentrator and a high flow home unit and ventilator to help him save his job and also help him walk on his own.
“Asking for help makes me feel like a bum, but I’ve decided to swallow my pride,” said Morgan. “I’ve always wanted my independence. I’ve been extremely blessed thus far with the people who have contributed. This would be a great chance to live life and make my quality of life phenomenally different. Our community has been amazing to me. I hope my story gets the word out there about this disease.”
In the end, Morgan wants to gain back his independence while also helping children who have cystic fibrosis.
“I used to do Gifts to Fibrosis, so I would get gifts for kids coming into the hospital with cystic fibrosis,” said Morgan. “I’d like to continue that and get gifts for those kids with the rest of the funds I raise. Anything I can do above and beyond to help others is important.”