Marissa Morse is tall, standing at 5’10”. Her hair isn’t too long, only touching as far as her shoulders. Her brown eyes are a touch lighter than her hair. She can easily blend into a crowd.
The only thing out of place is the teal, cream and gray brace around her neck after surgeries and when she goes to bed.
Marissa, 26, has Ehlers-Danlos syndrome, more commonly known as EDS or connective tissue disease.
“It’s not a huge burden, but she can’t drive, she can’t do a lot of things, so I take her to a lot of appointments and that kind of stuff, and just spend time with her,” said her brother and Red Bombers running back John Morse.
Connective tissues are anything in one’s body that hold tissues together such as joints, organs and arteries.
EDS can come in many forms. Hypermobility in the joints is one form, and, as a genetic disorder, has affected John to a lesser degree than his sister. He has had two shoulder surgeries and dislocates his joints regularly, but it doesn’t measure up to Marissa’s surgeries.
Marissa was diagnosed with a more severe form, vascular, where the connective tissues around her heart can come apart and she can bleed out internally in minutes.
Her latest surgery on the 18th, a spinal fusion, was to fuse her skull to the top two vertebrae of her neck to pull her skull back because it was sitting too far forward, and it put a lot of pressure on her brain stem. Because of this, her brain couldn’t tell her body to perform normal functions.
Her recovery time is five days in the hospital, the first three in the intensive care unit, and the next 10 days in a hospital.
She has also had shoulder surgeries and multiple surgeries on her stomach.
When she was younger, Marissa had epilepsy, but despite the hardships has always been known to have a smile on her face and a strong, confident attitude toward something that would hinder many others. She raised money for epilepsy foundations and has since she was young.
Marissa was first diagnosed with a “mystery illness” in 2007, a year after graduating high school, and she had to leave the basketball team and occupational therapy studies at Mount Allison University to come home to Fredericton. She only finished a year and a half as a Mountie.
“She couldn’t live on her own – she was missing class and sick, so she came here so mom could help her out so she could finish her degree.”
No doctors could figure out what exactly was causing her illness until the summer of 2013, when she was officially diagnosed. While awaiting the diagnosis, she got a degree in kinesiology from UNB and started her master’s degree at Dalhousie University. The EDS became too much for her and she has put her master’s on hold.
“My parents basically started shopping her around to doctors in Ontario and Boston,” said John.
After a long array of doctors, tests and interviews, a doctor in Hamilton, Ont. diagnosed her with EDS and they found a doctor in Washington, D.C. who was able to perform the surgeries needed because no one in Canada can perform it.
But it wasn’t as simple as just driving to the hospital the day of.
The Canadian government had helped pay for the travel costs and appointments because they have to travel to the U.S., but because the surgery is “controversial,” as no one in Canada can perform it, the government wouldn’t pay the $100,000 needed.
“When we got that news, I’d seen what my parents had been through in the last few years and just trying to get money here, get money there, put it together, and so I just started talking to my friends about it,” he said. “And the next thing I know, guys from my team came up to me and said ‘we want to help, we want to do this.’ ”
John, his family, teammates and friends have all come together to help fundraise the surgery cost. Marissa, although relying on much from her family, has taken on her own initiative and started a Youcare.com fundraising campaign in mid-January, which has already raised over $9,100.
The topic of discussion in his family, however, is what goal they want to set.
“These surgeries, the numbers are just ludicrous. It’s unreal.”
With help of his coaches and teammates, John is planning a breakfast with the Wisemen, a “social and working group of men who enhance the lives of youth by taking care, subsidizing and fundraising for the local Wiseman’s Club camp,” according to their website. He is also organizing a flag football tournament and putting together a basket, where they will raffle off tickets at Fredericton’s Regent Mall.
“I remember one of my coaches told me to come down to the Cellar and we’d have a talk, so I did and he said, ‘The football team is a family. One person’s hurt, everybody’s hurt. One person needs help, we’re all here to help,’ ” he said. “That was quite overwhelming, the support I’d gotten from them.”
He and his family have also seen support from the board of directors for the football team, friends, family and strangers.
“I really didn’t expect the amount of people that have just jumped on board and wanting to help,” said John. “I play on a men’s league and when driving home he got out of the car and his teammate shook his hand and gave him a $100 bill.”
The Youcare.com page Marissa started has an $80,000 goal, but that will only help with about 80 per cent of the medical and travel costs. John is hoping to raise as much as he can to help older sister who he can’t speak higher of.
“I really can’t put it into words. She’s my sister, I love her to death, I spend a lot of time with her because she’s just at home. I’d do anything for her.”