A service dog for NicholasWe were introduced to Nicholas thanks to a Cherish the Children Foundation Volunteer.
Nicholas is a vibrant 5 year old boy with Angelman Syndrome, a rare genetic disorder that affects the nervous system and is characterized by learning disability and developmental delays as well as a variety of types of seizures and problems with movement, balance, falls and being disoriented. He needs constant attention. At night, Nicholas has difficulty sleeping and wakes the household up at all hours of the night so that he is not alone. His bedroom is set up as a safe room with padding on the walls, no furniture with the exception of a bed, and shelves which are bolted to the wall and filled with only stuffed animals and soft toys. His parents have 2 monitors to watch and hear him in his bedroom.
The family is confident that a trained service dog would provide Nicholas with safety and protection. If he has a seizure, or is in harm's way, the dog can alert the family. Service dogs are trained to assist their companion during seizures as well as daily activities. A trained dog can help keep Nicholas away from stairs, counters, or something that is dangerous to him. Nicholas will gain independence, growth, health and hope with this gift in his life.
For the past two years, the family has been working hard to raise the funds necessary to obtain a service dog for Nicholas. However, despite the efforts of the family and friends, only half of the cost has been covered. Cherish the Children Foundation has granted to the family the remaining funds necessary to obtain a service dog for Nicholas, as well as travel expenses associated with the training session for the family. After a very long wait for the perfect match of a companion dog the family traveled to Ohio to meet and train with Nicholas` dog.
"Galen "Lenny" is so incredible. He's so gentle and sweet. It (the training) was such an incredible experience and we are so appreciative of everything and everyone at your foundation for making this possible for us. Our family is truly blessed. Thank you so much."
Weston's Home RenovationYou 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.
OlsenOlsen is diagnosed with Pfeiffer Syndrome, which is a rare genetic disorder effecting the the skull, hands and feet, as well as causing bulging and wide-set eyes, and other facial structure issues.
More than half of all children with Pfeiffer syndrome have hearing loss and dental problems are also common. In Olsen`s case, there is added neurological and developmental issues. Olsen spent the first 2 months of his life in the NICU, and has had about 15 surgeries to date. He has a trach, a g-tube and a shunt in his head. Olsen requires 24-hour nursing care. His care requires such skill that only his mother or a nurse can take care of him. Even with Medicaid approved 24-hour nursing, it is very hard to find nurses available for this level of care, and the current environment with coronavirus has only made things more difficult.
As a single mom caring for Olsen, Esther has had to leave her job, and will return to work as soon as she is able to secure appropriate care for Olsen. CTCF has granted the family an air purifier for the apartment (necessary for Olsen`s health situation) and gift cards to help with the cost of groceries and household needs.
AbigailTogether with Molly Tango Foundation, we were able to provide Abigail with an adaptive stroller and Hoyer lift.
Mom and Dad no longer have to lift Abigail on their own, and with the stroller they are able to get out into the community with more ease, offering better quality of life for all!
LindaOur friends at Leah's Foundation in Wethersfield introduced us to a 6 year old Linda who is battling Leukemia. Linda, along with her parents and 4 year old sister, make frequent jaunts from Stamford, CT to CCMC in Hartford for medical needs. To ease some financial stress CTCF provided a grocery gift card and granted these Stamford sisters wish for American Girl dolls to call their own.
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