Comedian Jimmy Tingle and the Beelzebubs, the all-male a capella group from Tufts University, gave Globe Santa a helping hand with collecting money for the fund on Newbury Street in Boston.
(Mary O’Connor for The Boston Globe)
Globe Santa
Mother of 4 special-needs children wants Christmas gifts for them
Comedian Jimmy Tingle and the Beelzebubs, the all-male a capella group from Tufts University, gave Globe Santa a helping hand with collecting money for the fund on Newbury Street in Boston.
(Mary O’Connor for The Boston Globe)
Having just one child with special needs is a challenge. But that challenge is multiplied four times for one South Shore mother who has sent a written appeal to Globe Santa asking his help in providing gifts for her children this Christmas.
Each of her four children, two girls and two boys ages 10 to 18, struggles with medical problems, ranging from Tourette’s syndrome to juvenile arthritis to neurological damage due to multiple concussions.
These afflictions “require medications, interventions, and numerous trips to Boston for evaluation and treatment,’’ the mother wrote.
But, she adds, it’s her oldest daughter whose problems consume most of the family’s time, energy, and finances.
This girl is 15 years old, but doctors say her cognitive age is equal to that of a 5-year-old, which means she faces myriad learning disabilities. She also undergoes complex treatments for a rare neurological/metabolic disorder.
Her mother added that she is “medically fragile’’ and her pain is “acute.’’
“Sadly, she suffers every day,’’ she said in her letter to Globe Santa. “It is so distressing to watch her fragile body stiffen, tremor, and fill up with fluid as she cries with discomfort and fear.’’
The girl’s daily interventions include suctioning, oxygen intake, nebulizer treatments, airway management, fluid-replacement therapy, feeding tubes, and multiple medications.
“Over the years, her autonomic nervous system has gotten worse,’’ her mother said in her letter. “We cannot control her blood pressure, temperature, and heart rate, so her environment must be regulated to assist with constant fluctuations.’’ She also refers to this daughter as a “frequent flyer’’ at Children’s Hospital in Boston, and said the whole family is affected by her medical issues.
“It’s a daily challenge to keep her at home and keep her comfortable,’’ she said. She also described her other three children - despite their own issues - as “so incredible’’ with their sister.
“They are all warm, compassionate, and full of life,’’ she wrote. “We truly are a family and we work together to stay united as a team. We love her so much and we are always there to wipe her tears, cuddle and hold her, or whisper into her ear to tell her how much we love her.’’
She points out that her daughter’s issues mean she requires one-on-one care from her mother or a health professional, 24 hours a day.
“At this time, we are really having difficulty financially,’’ her mother wrote. She said she often has to take time off from her job so she can stay home with her daughter.
Her employer agreed to let her switch from a full-time to a part-time schedule, but that doesn’t ensure her daughter is constantly cared for, and it puts the family in even more precarious financial shape.
“I don’t like to think of it this way,’’ she wrote, “but having a child with such serious medical issues, and trying to raise three other children at this same time, has become a real hardship. All of these interruptions in our lives create significant strain.’’
She adds she wrote to Globe Santa because she wants her children to have gifts to open Christmas morning.
“We would be so grateful for any help you are able to provide our family this Christmas,’’ she said. “Thank you for considering us.’’
© Copyright 2011 Globe Newspaper Company.
