You see him, and you know why his doctors call 8 year-old Weston a Miracle Child. Miracle because at 22 months doctors diagnosed that Weston’s central nervous system was under attack from atypical teratoid rhabdoid tumor (ATRT – https://www.stjude.org/disease/atypical-teratoid-rhabdoid-tumor-atrt.html). A rare but aggressive, stage-IV cancer, ATRT attacks the cerebellum and the spinal cord. The survival rate is tragically low. Thus while ATRT is a rare cancer, survivors who have lived as long after it as Weston have even rarer. Here is why survival is low. The cerebellum controls motor movement – the ability to balance and to control muscles. It manages the muscles speech and the movement of eyes. It receives and transmits signals from the spinal cord and senses to the other parts of the brain; it relays back signals from the brain to those other systems. Weston’s had more than one surgery; his last was in 2013. After removing the tumor from his cerebellum, he underwent 52 weeks – one year! — of chemotherapy. And then after the chemotherapy six weeks of radiation treatments.
His life is a miracle. A miracle of medicine, yes. But also a miracle of family love. Weston lives with his grandparents, Susan and Michael in Bristol. Along with his mother, aunts and uncles, and cousins, Susan and Michael, as legal guardians, are seeing Weston through the life adjustments and ongoing therapies.
With help from Cherish the Children, Susan and Michael, who both took early retirement to provide the care he needs, have been able to start the necessary accessibility renovations needed for Weston to thrive in their home.
Weston`s accommodations and ongoing medical needs are significant.
He lost half his hearing, requiring hearing aids. His pupils are permanently dilated, requiring specially tinted classes and services for the blind. Tremors making walking, even with a special walker unsteady and dangerous, despite physical therapy, and so a wheelchair is often required. He works with a speech therapist to help improve his chewing and speaking skills. A programmable shunt for draining excess fluid remains in his brain. Every six months he gets an MRI.
The Jacobs home, a small cape, needed far more than a wheelchair ramp. It needed significant work to meet Weston’s mobility needs. Doors had to be widened, a first floor bathroom had to be enlarged accommodate a wheelchair. That meant taking up kitchen area space and removing the bathtub to put in a full standing shower. But the kitchen couldn’t be shrunk, which mean it too had to be expanded in turn, with doors widened, a handicapped sink installed, counter tops, fixtures and appliances replaced. With these changes, Weston can now live in the first floor of his grandparents’ home. He can help Susan in the kitchen — he loves to stir mixes. He sits with family at the kitchen table to enjoy his favorite foods — chicken nuggets, mac and cheese, grilled cheese, and peanut butter and jelly. When his cousins visit, they can play with him in a backroom — indoor Nerf basketball, Matchbox cars and trucks. The simple games of growing up. The stuff that childhood memories are made of. That’s what Weston enjoys, what his family provides, and what your donations to Cherish the Children help the make possible. Your dollars strengthen and expand their love and devotion. There is no better gift.
