Elmira woman calls her rare condition 'really degrading', prepares for surgery in Arizona

Kennedy Shannon at the Mayo Clinic in Arizona, June 2022. (Submitted/Lori Shannon)

An Elmira woman born with Pectus Excavatum, a condition where her ribcage is caved in, is getting set for a life-changing surgery, south of the border, in May.

Kennedy Shannon, 20, has an extreme case of the condition. Her heart is compressed on top of her stomach.

“It's been really frustrating and really degrading to go through as a person. Throughout my elementary years I suffered a lot of bullying and I suffered very early onset depression and anxiety" Kennedy said.

"Her right ventricle is so compressed it has to work 35 per cent harder to get the blood to the other side of her heart," Lori Shannon, Kennedy’s mother said.

Kennedy's family noticed her struggling to catch her breath early on in life. But doctors told them the condition was not the cause of her issues.

"She did soccer and she did dance. She would tire a lot sooner than a lot of the other kids," Lori said.

"I thought I was crazy. I didn't know what was going on. All the doctors dismissed me saying everything was fine. Well it wasn't fine, because I was passing out. I was getting really winded," Kennedy said.

One time when she was working a retail job, she recalled fainting from having to do so much walking. Kennedy is currently a barista and said that can also be challenging. She is also a psychology student at the University of Waterloo and struggles to walk across the campus.

"I can't really do much. I’m kind of bound to doing nothing," Kennedy said.

In June, the family travelled to the Mayo Clinic in Arizona to seek a different opinion. That’s where a specialist confirmed her condition was causing her shortness of breath and changing heart rate.

"I was actually in tears because I felt someone believed me and someone told me that it wasn't all in my head," Kennedy said.

To correct it, metal bars need to be inserted into her chest. Kennedy’s condition is extreme and requires three to four bars to work. Lori said surgeons in Canada have limited experience with it and will only do one to two bars.

"Nobody has experience with three to four," Lori said.

The family will be travelling to Arizona in May, where Kennedy is scheduled for surgery. The cost is adding up between travel and the estimated $50,000 surgery.

The family has set up a GoFundMe page  to help cover the costs, but Lori said they will make it happen no matter what.

“We would be willing to put our house up for sale if we have to,” Lori said.