Meet Carmelina Durocher. Carmelina and her twin brother Giovanni were born at 36 weeks. Unfortunately, following birth Carmelina stayed in the NICU for 9 days after complications during birth.
“The umbilical cord was wrapped around her neck and so she suffered from oxygen deprivation,” said Carmelina’s mother, Donna Durocher. “Due to the lack of oxygen at birth she was later diagnosed with an intellectual disability,” she added.
“Carmelina and Giovanni came to us when they were five weeks old, stole the hearts of the entire family and have been with us ever since,” said Donna.
At 18 months, she had spinal surgery for tethered cord syndrome. Tethered spinal cord syndrome is a neurological disorder that is closely associated with spina bifida. It is caused by tissue attachments that limit the movement of the spinal cord within the spinal column. Not long after, she started having seizures and was in and out of the hospital to help control her epilepsy.
Carmelina’s health journey didn’t end there. At five she was diagnosed with “failure to thrive,” a condition used to indicate insufficient weight gain or inappropriate weight loss. Once diagnosed, she had surgery to implant a G tube for feeding. Fortunately, after 4 years she was able to have the feeding tube been removed and she now eats on her own.
The battle wasn’t over, however. It was discovered that there was more to her condition than previously thought.
“Thanks to the help of researchers at Baystate Children’s Hospital we found out that Carmelina had a duplicate gene,” said Donna. “She was then diagnosed with 16P11.2 duplication Disorder, a condition that helps explain many of her ailments; seizures, speech delay, autism tattered cord, failure to thrive as well as her short stature for her age,” Donna said.
Despite her many health challenges Carmelina has always found time to give back. “At 5-years-old she started painting and I realized how beautiful the pieces were so I decided to frame her work,” said Donna. “We then decided to start selling the paintings and donate the proceeds to support Baystate Children’s’ Hospital and the Children miracle network,” she added.
She’s not just a painter; Carmelina is also an avid dancer.
“She takes ballet, modern, tap, jazz, hip hop, and her favorite- African,” said Donna. “Not only does she love dance, it’s actually part of her physical therapy. As a result of her spina bifida, Carmelina’s hamstrings can get really tight. Dancing helps to stretch them out and ease the symptoms,” she added.
Over the years and through all of Carmelina’s diagnoses, Donna says the staff at Baystate Children’s Hospital has been more like family.
“Baystate Children’s Hospital has been a true blessing to Carmelina and our family,” said Donna. “We were told that Carmelina would be blind, deaf and would not be able to walk on her own, but through the efforts of doctors and nurses a Baystate Children’s Hospital, she has conquered all of this,” she added.
Today, Carmelina, who like to be called Lina now, is a thriving 12 year old girl. While she is still working though many of her diagnoses she continues to dance through life.
“Despite many setbacks, she continues to grow into the lovely young woman I always dreamed she would be,” said Donna. “Carmelina is a wonderful, fun exciting little girl that never lets anything stand in the way of her dreams,” she added.