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Date: 9/20/2022
EASTHAMPTON – On Sept. 25, the Pediatric Hydrocephalus Foundation (PHF) will host its annual Hydrocephalus Awareness Walk and Run for the first time since the onset of the coronavirus pandemic. This year’s walk will take place on Sept. 24 at Millside Park in Easthampton.
Bella Sacharczyk, who lives with hydrocephalus, explained that the disease is an “incurable brain condition in which the cerebral spinal fluid does not drain.”
Sacharzczyk said she was diagnosed with hydrocephalus after she had e. coli bacterial meningitis, which caused a stroke leading to hydrocephalus. She added that it can also be caused by brain tumors, infection traumatic brain injuries and cancer.
She said that there are only two available surgical treatments for hydrocephalus.
“There is the shunt, which is a tube that goes into the ventricle, there is a valve in the back of your head, and it gets drained most commonly into the abdomen. The other treatment now is an ETB which is basically they put a cauterized hole in the ventricle and that’s how they drain it,” she said.
Sacharzcyck said both procedures have high risks for infection and a chance to not work, and the ETB procedure cannot be used for everyone. When describing the shunt, she said it can break or get clogged, both issues require brain surgery to fix. To date Sacharzyck said she has had 23 brain surgeries.
Through the PHF’s fundraising efforts nationwide, doctors and researchers were able to develop a reflow device to help prevent additional brain surgeries.
“They’ve created what’s called a reflow device, which is basically an addition to the shunt, and it will basically unblock the blockage in the catheter that goes into the brain and gives the shunt a second life, so that would alleviate a surgery,” she said.
Now a student at Westfield State University, Sacharzcyck said she fought “tooth and nail” to get to where she is now. That’s also how she finished high school with a 3.94 GPA, placing her 16th in her class at Hampshire Regional High School.
“School is not easy for me, I have an accommodation plan at school, I have tutors, I have extra time on my exams, I have so many things in place to make it possible for my dreams come true, but it is not easy,” she said.
She added that she started work on her bachelor’s in 2017 and expects to graduate in the spring of 2024.
Bella said her mother, Denise, did everything she could to make sure she succeeded.
“When I was diagnosed, my parents were told I would never walk, talk, see or hear and they were advised to put me in a home because I wouldn’t amount to anything,” Bella said. “My mom didn’t really believe that and sent me to every play group, anything she could get her hands on to make sure I was hitting milestones.”
While it was difficult at the time Bella said it was because of her mother that she was able to get to where she is now.
“I attribute everything I have been able to accomplish to all the effort and energy that my mom put into working with me and creating the person I am today,” she said.
Denise added that Bella received significant support from her schools during her education.
“All through school Hampshire Regional, Westhampton Elementary, I cannot say enough about those schools and those teachers working with Isabella to help her reach her goals,” Denise said.
Denise added that in the early days, interventionists would visit twice a week to have Bella play with toys to help her get through the disease and she went out to buy those toys to keep Bella up with the therapy she was doing.
When Bella was 15, Denise said she faced complications from one of the brain surgeries.
“One of the surgeries her brain was herniating into her spine and that left her unable to walk. She could not walk, she had a hard time talking, she was in a coma for a week, and she had a hard time doing every day, menial things. She spent almost a month in rehab in Ludlow,” she said.
Following that surgery, Denise said it took Bella 10 months to recover.
Bella said her goal now is to do her own research into hydrocephalus.
“I am working toward my bachelor’s in biology, and I want to become a microscope techniciain in a lab doing research on early brain development and hydrocephalus. That’s my passion, since the day I joined PHF and saw what we can do as a foundation to further that research, I have made it my mission in life to be part of the research,” she said.
Prior to COVID-19, Bella said she had internships three years in a row at Boston Children’s Hospital working with one of the doctors in the labs who is researching the part of the ventricle that produces cerebral spinal fluid.
Now Bella lives on her own at her college campus and is able to drive on her own, something her mother never thought was possible.
“She drives her own car now and we never even thought she would be able to do that, we thought she would always live at home with us. She’s on her own,” Denise said.
One of PHF’s goals is to educate doctors about hydrocephalus, which Bella said is different for everybody and likened it to autism spectrum disorder with the variety of ways people experience it. Because of how people react to the disease, Bella said it can lead to complications in surgeries as regular emergency room doctors do not typically have the same experience with the disease as neurosurgeons do.
Since its inception in 2014, Bella said the walk has raised between $50,000 and $60,000, all of which has gone to hydrocephalus research through the PHF. Each year between 50 and 100 people attend the walk. Bella added that the walk is her “baby.”
“I always shoot for the stars, and I don’t really do small things, I decided that we’re going to do a walk and it just kind of blossomed from there. I start working on it in January and I work all the way until September and start all over again in January,” she said.
At the walk people can expect a bounce house, raffle prizes, a DJ and more. Registration is free and can be done online at: https://phfmassachusettswalk2022.eventzilla.net/web/event?eventid=2138583586. Day of registration begins at 9 a.m. ahead of the walk which goes from 10 a.m. to 2 p.m.