New Bedford Honor Student has Aced her Biggest Test
The Standard-Times
By Sarah Gonet
NEW BEDFORD — With a bright smile, loving family and sharp mind, honor student Lauren Madruga seemingly has it all.
It's the medical challenges she must overcome every day that complicate things.
"She takes school so seriously. It's her life," said Connie Madruga, Lauren's mother.
"When you think about what she has to do to be here, it's pretty amazing."
Lauren, 16, suffers from MPS VI, a form of the genetic metabolic disease mucopolysaccharidosis, which affects about one out of every 215,000 births. Those with the disease lack an enzyme in their bodies, and as a result their cells do not function properly. There is no cure.
Although Lauren was a seemingly healthy, full-term infant, it quickly became apparent that something wasn't right.
"At first it was a lot of little things that didn't seem to add up," said Ms. Madruga, explaining that Lauren developed sleep apnea as an infant and went on to have her tonsils and adenoids removed.
"She was and still is such a beautiful girl," Ms. Madruga said.
The official diagnosis came when Lauren was about 18 months old, and her disease has since progressed, resulting in bone, heart, hearing and vision problems. She lost her sight at age 8. She is confined to a wheelchair equipped with oxygen tanks and a respirator, and must remain on life support 24 hours a day to survive. At home, she uses another life-support machine.
Because of her complex medical needs, Lauren is never without the company of her mother or nurse, Mary Ann Cordeiro.
"We are always by her side in case something happens and she needs us," said Ms. Cordeiro, who picks Lauren up for school in the morning and accompanies her to classes Tuesday through Thursday.
Her mother takes her to school on Fridays, while Mondays are reserved for their weekly trip to Boston Children's Hospital, where Lauren began receiving infusions of Naglazyme a year-and-a-half ago.
The enzyme treatments, which were suggested by Lauren's physician, Dr. Charles Gormley, have helped to slow the progression of Lauren's disease, giving the close-knit family cause for celebration.
"There were times when we thought we were going to lose her," Ms. Madruga said. "We're very fortunate insurance has agreed to cover the care she needs."
"All I can say is that she's an inspiration to all of us," said Lynette Robitaille, a physical therapist who works with Lauren.
Even more amazing than the New Bedford teen's physical resiliency are her intelligence and commitment to education. By using a computer adapted with Intelli Keys, which vocalize what appears on the screen, Lauren is able to type up her homework and term papers, while surfing the Internet and sending e-mails.
"I like working with computers," said Lauren, who is considering furthering her education in the field after high school.
Lauren, who listens on tape to both her textbooks and those she reads for pleasure, recently received an award from Perkins Institute for the Blind in recognition of her reading 60 books in six weeks.
"She's working right at grade level and taking honors courses," said Susan Gramprey, a teacher of the visually impaired who has known Lauren since she was 6 years old. The ambitious 10th-grader also spends considerable time in mainstream classrooms, learning alongside her peers.
"She has a phenomenal memory and ability to conceptualize."
"We are always working to come up with new ways to help her learn," paraprofessional Maria Palhota added.
"Her teachers are phenomenal," Ms. Madruga said.
"They go out of their way to make sure Lauren has everything she needs."
"I love school and reading. Nancy Drew books are great" said Lauren, a mystery buff who is able to hear with the assistance of a bone conductor she wears in her ears. The device also enables her to listen to her favorite musicians, such as Hannah Montana star Miley Cyrus.
Her favorite pastime, however, is scrapbooking. While she doesn't actually put the pages together, she directs her mother and 12-year-old sister, Victoria, on the design and placement.
"It's something we do together as a family," Ms. Madruga said. "There's nothing more important than the time we get to spend together."
It would be understandable for Lauren to become frustrated with her illness, but according to her mother, it rarely happens.
"She has always had this attitude where she just goes with it," Ms. Madruga said.
Lauren is also quick to share some typical big sister advice with her younger sibling.
"I tell her to take school more seriously. That education is so important for your future."