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Parents of children with complex medical problems turn to Globe Santa for help
Caring and advocating for children can be all-consuming.
The 17,000-plus families who write letters to Globe Santa find their way to us through a variety of social service agencies that assist them in some way. There are 52 of these agencies in Greater Boston which are registered to recommend families for holiday gifts.
One of these is the Massachusetts Commission for the Blind. The stories told in these letters are surprising, and at times shocking.
My 7-year-old son has a rare genetic neurological disorder called FOXG1 syndrome, which limits his functioning. He also has epilepsy, global development delay, and CVI, in which he is legally blind
My older son has multiple disabilities. He is legally blind. He had a heart transplant surgery when he was about 9 months old. He also has the diagnosis of autism spectrum disorder.
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My son is legally blind with colobomas in both eyes. His vision is limited, he is profoundly deaf, has CHARGE syndrome and Tetrology of Fallot (heart condition) and is fed by G-Tube.
My daughter is a very happy 10-year-old girl, [who is] neurologically only about 2.5 years old. Her diagnosis is: Cortical visual impairment, 13q14.3 chromosome deletion, severe autism, global development delays, feeding problems/G-Tube, and seizures.
The letters reveal to us that blindness and visual impairment are not always a stand-alone condition, nor even just an eye-based problem. “It’s oftena brain-based issue, especially in the case of young children, ” said Dr. Lotfi Merabet, Associate Professor of Ophthalmology at Mass. Eye and Ear and Harvard Medical School.
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“There is a lot of individual variability in these kids, and it can present in a very complex way involving not only their vision, but also language, hearing and motor development depending on how extensive the brain damage was early on. The cause of the brain damage and maldevelopment might be something like a stroke or a genetic cause, and so it’s frequently associated with severe co-morbidities such as seizures and motor disorders like cerebral policy.”
Why do these parents turn to Globe Santa? Their letters tell us that caring and advocating for these children is all-consuming, which impacts their ability to hold a job and support their families.
“I am an active advocate for my daughter,” as one mother wrote, “both to get her services and allow her to be a child.”
And yet for these children, simple gifts can be such a joy. “He loves books, animals, puzzles, and anything tactile, writes the mother of the 7-year-old boy who’s legally blind and fed by G-Tube. “He is a happy little guy who has done amazing things!”
When her medically-challenged little girl outgrows toys, a mother writes, “I donate them to therapy centers that they could use for their patients, or other families within my local communities that are presented with hard times.”
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Linda Matchan can be reached at [email protected]
For 68 years Globe Santa, a program of the Boston Globe Foundation, has provided gifts to children in need at holiday time. Please consider giving by phone, mail, or online at globesanta.org.
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