Remi Woods has been through a lot in her young life, more than most adults could even imagine enduring.
The 9-year-old Igo Elementary School student had to undergo five brain surgeries in 2015 and 2016. She was diagnosed with Chiari malformation, a structural defect in the base of the skull and cerebellum, and after her first surgery developed hydrocephalus, a condition in which excess cerebrospinal fluid builds up within the cavities of the brain and may increase pressure within the head.
Remi has a customized medical device called a VP Shunt installed in her brain that distributes excess cerebral spinal fluid from her skull to her abdomen.
She is at risk of sudden falls, called “drop attacks,” and choking, and has trouble processing and communicating her thoughts and feelings. She is also prone to unexpected behavior, especially in places she’s never been before or when there is a lot of excitement and noise.
But through it all, those close to Remi say she is a model of resilience and positivity, and an inspiration to others.
“We are so proud of Remi,” said her father, Ron Woods. “Her spirit is unbreakable. I am so excited as she grows and we learn about her dreams and ambitions. I know she will not let anything hold her back.”
“She shares a positive attitude with her classmates and teachers and is always quick to share a funny story from her life,” said Michael Stanton, principal at the Igo Elementary School, where Remi will enter the third grade in the fall. “It’s been wonderful to see the tremendous growth she has made over the years.”
Remi’s family moved from Arizona to Foxboro in May of 2013, but her mother, Tarah Woods, is originally from Easton. The family moved back to Massachusetts so Remi could receive medical care in the Boston area.
Remi was born five weeks premature on Feb. 10, 2010.
Tarah said she began to notice by age 1 that Remi was not developing as expected and not meeting some milestones. At 18 months, Remi was beginning to have drop attacks and suffered several head injuries, some requiring stitches to her face.
“Remi would spontaneously lose all muscle tone and collapse where she stood or sat,” said Tarah, who is the dance director at the Marilyn Rodman Performing Arts Center and a gemologist at Cindi’s Diamond & Jewelry Gallery in Foxboro. “I also noticed that her speech, fine motor skills, coordination, and balance were not developing as expected. We also noticed that Remi seemed to choke a lot.”
Tarah said she had a complicated pregnancy with Remi due to having undiagnosed lupus, but all indications through her prenatal care and ultrasounds showed Remi was healthy and developing as expected.
Remi had some labored breathing after delivery and spent 10 hours in the intensive care unit, but the problem soon resolved and she was discharged from the hospital the day after she was born.
Her medical issues did not go away, however, and Tarah says the family “lived with the idea that surgery might be needed in the future for many years.” She said it became clear surgery was necessary because Remi was regressing with her motor skills and swallowing issues, which posed falling and choking risks.
Remi’s parents interviewed five neurosurgeons before deciding on Dr. William Butler at Massachusetts General Hospital in Boston.
“This was our child’s brain — the epicenter of who she is, the core of her intellectual and emotional being,” Tarah said. “I had a hard time trusting anyone to operate on her brain and it left me feeling gutted with the weight of the decision of who would operate if ever she needed it.”
When Butler greeted them in the waiting room and welcomed the family into his office, Tarah said there was an “immediate feeling of trust and comfort.”
Remi’s health issues impact her daily life, and because she is at risk of falling or choking, someone needs to be with her at all times. The trouble she has processing and communicating her thoughts and feelings can be a real challenge because most kids her age think, speak and move at a quicker pace than she does.
“It’s not an overtly slower pace, it would be invisible to most,” her mother said. “But when kids lose interest in a conversation with Remi, it’s because the deeper she gets in thought, she takes a little longer than most kids to get her point across. She just needs people’s patience.”
Remi has completed hundreds of hours of speech, occupational and physical therapy and the family is looking for someone to train a service dog to help Remi with specific tasks.
Tarah said the shunt Remi has carries with it the possibility of future surgeries.
“It scares me beyond explanation as Remi’s mom knowing what she’s been through and the potential for more brain surgeries,” she said, but added she makes a “conscious effort to stay positive.”
“Remi’s on the upswing now and I’m rolling with it and loving every minute,” her mother said.
Remi is nearly three years past her last brain surgery and is enjoying camp for the very first time this summer at the Aquidneck Club in Portsmouth, R.I., where her father is the general manager.
“She golfs and plays in the pool, but sometimes certain activities are painful,” Tarah said.
Remi dreams of being a marine biologist. She does not really remember all of her hospital visits but said they were “crazy scary.”
“I have a hard time with some of the activities at school because I am not allowed to do some of them and sometimes it’s hard,” Remi said.
Her sister, Lula Woods, 11, who is going into the sixth grade at Ahern Middle School in September, describes Remi as “very nice, kind, sympathetic and humble.”
“She makes you happy when you are sad, even though sometimes she gets frustrated,” Lula said. “She is very pretty. When she had her first surgery, she was very strong and she didn’t really think anything of it other than it was just going to help her.”
Lula also has Chiari malformation. She was diagnosed in April 2016, and if her symptoms worsen, might also have to undergo surgery.
Their older sister, Sophie Soble, 18, said it is easy for people to overlook someone’s disabilities when they are not physically noticeable.
“Remi is an extremely positive, outgoing young girl who appears physically able but has had to endure five major brain surgeries,” she said. “Through all of her struggles, Remi has kept an optimistic view on life. She is physically and mentally the strongest person I have ever met.”