There’s an online fundraiser happening right now for Marissa Morse, seen here Dec. 19, 2013 at her 26th birthday dinner with her grandfather, John Morse, of Hantsport. (Submitted photo)
It’d be easy for Marissa Morse to get down in the dumps and let her ailments shape the course of her future.
But anyone who knows the spirited 26-year-old also knows there’s a fat chance of that happening.
Morse spent the first 18 years of her life in Hantsport, where she developed a passion for volunteering and an unwavering love of basketball. The top student taught swimming, and even became a lifeguard, but basketball was always No. 1.
Morse won championship banners with the Horton High Griffins and went on to play for Mount Allison University after high school.
Everything was going as planned — or better — until she started experiencing mystery pains in 2007. The pains signified the beginning of a six-year period of time in which Morse’s plans would drastically change.
She stopped playing ball and transferred to UNB in Fredericton to complete her Bachelor of Science in kinesiology while living under the same roof as her mother and primary care provider, Brenda Gillis.
“To stop having to play basketball when all of this started, I took a huge hit from that. I was playing at the university level and I couldn’t anymore. That was something that was really taken away from me,” said Morse, in a recent conference call involving the Hants Journal and Gillis.
“That was a major piece of my life.”
It all started with ‘mystery pains’
Mystery pains, often shooting through her abdomen, legs or head, became more frequent and severe as Morse completed her degree.
“In terms of her years at UNB, she was a disabled student there and it was a real rollercoaster for her because on any given day she may not have been able to attend class, leave the house. She could have ended up in the hospital the night before or spent the night in the ER,” recalled Gillis.
In spite of the undiagnosed illness that threatened to throw her off course entirely, Morse completed her undergraduate degree while travelling from doctor to doctor in pursuit of answers.
In 2012, she was living in Halifax and working her way through a Masters Degree in Occupational Therapy while still contending with severe fatigue, sharp pains in her head, legs, joints and back, regular bouts of nausea and debilitating dizziness.
“Her legs will collapse and she’ll have to crawl along the floor because she can’t get up,” Gillis said.
Morse left school on medical leave and moved back in with her mother in Fredericton, where she has access to hand and finger splints, a hip brace, neck brace, cane, wheelchair, power scooter and power-lift chair.
“She doesn’t drive her car, she can’t work, can’t go to school. There was a period of time that her balance was so bad I had to stay home with her, not even leaving the house unless she promised not to leave her bedroom,” said Gillis, who was afraid her daughter would fall down the stairs.
Morse, who still finds time to volunteer in online capacities, was hospitalized for a total of eight weeks in 2013, and much of her time spent outside of a hospital room was devoted to travelling to doctor appointments in New Brunswick, Nova Scotia, Ontario, Boston, Rhode Island and Baltimore.
A physician based in Hamilton, Ont., examined Morse in January 2013 and referred her to colleagues in Baltimore and Boston that studied a genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS).
“He also indicated that he didn’t think it would be just one thing wrong,” said Gillis.
He was absolutely right.
Morse has been diagnosed with EDS, Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), epilepsy, hypothyroidism, chronic pain syndrome, chronic fatigue syndrome, neurogenic bladder, tethered cord syndrome and craniocervical instability.
Doctors believe a car accident Morse was involved in in 2007 — when she was rear-ended and suffered whiplash on impact — may have been the catalyst that triggered the EDS.
Morse listened to a world-renowned neurosurgeon present on the topics of tethered cord syndrome and craniocervical instability at a learning conference on EDS hosted in Rhode Island in August 2013.
She managed to connect with the presenting neurosurgeon, who agreed to review her case. That same doctor is now saying he may be able to correct the tethered cord syndrome and craniocervical instability with two surgeries that are only available in the United States.
Morse has already travelled to the US to complete testing required for a diagnosis, and the two corrective surgeries are expected to cost at least $30,000 each plus the travel costs associated with having Marissa and a family member stay there for an estimated time of two weeks per surgery.
It is believed the surgeries will alleviate the debilitating symptoms that have stripped her of her independence, and allow her to continue her studies in occupational therapy.
“She will get better,” said Gillis. “She’s a fighter. She’s worked hard her whole life. She’s always worked hard at everything she’s done and her ultimate goal in life is to give back and to help other people. That’s why she’s in the career path that she’s in.”
It’ll take a village to help this child
Morse is counting on the generosity of friends, family, past acquaintances and the general public to help her get back on her feet.
“I’m actually pretty excited. I just want my life back,” Morse says. “I just want to be able to go out and do things that people my age get to do.”
Gillis says Morse’s family is unable to cover the cost of the required surgeries alone. Last year, Morse’s out of pocket medical expenses exceeded $10,000.
Gillis launched an online fundraiser to share their story in hopes of raising $30,000 to cover the cost of Morse’s first corrective surgery. The family has been humbled by the spike in support the fundraiser received so far, especially in Morse’s hometown of Hantsport.
Morse, whose father owns the Hantsport-based Morse Machining Ltd., says people she barely knew — people who simply remember her as the little girl who grew up down the street — have donated to her cause.
“It’s just amazing that there’s so many generous people out there that are willing to do things for people like me. I had no idea until we started this.”
As of Feb. 3, 75 supporters had donated $7,214 toward Morse’s surgery via a website established for the fundraiser.
Who knows? Morse may well find herself back on the basketball courts one day.
“I could easily get overwhelmed by saying, ‘Oh my gosh, I’m not in school anymore, I can’t live on my own anymore, I cant drive but, the thing is, I’m very optimistic that I’ll get those things back in my life,” Morse stressed.
“It’s just a matter of time.”
Donations for Marissa Morse can be made online through www.youcaring.com/medical-fundraiser/26-yr-old-marissa-s-life-is-on-hold/129104 or mailed to 73 MacLean Ct, Fredericton, N.B., E3G 9Y1.