Amazing Ben
Donation protected
Amazing Ben is 4 years old . He was born with Osteogenesis Imperfecta also known as "Brittle Bone". He suffered multiple bone fractures at birth, and presently continues to fracture his bones. Fractures can occur with just a cough or a sneeze. While putting a sock on him at 3 weeks old, his left lower leg (tibia) fractured. He had to be handled like China Glass. Holding and feeding him was difficult because fractures easily occured.It was heart wrenching , and painful for Ben.
Amazing Ben not only suffers bone fractures but also lives with secondary issues. He has had multiple neuro surgeries for hydrocephalus and problems with Chiari Malformation. He was in the pediatric intensive care on his first and second birthday, and all of the holiday seasons. We flew him to the best neurosurgeons in the United States. He suffered a stroke this year in April at
UCLA Medical Center while surgeons tried closing the 7.5in gap of his skull that exposes his brain to the world and has a high risk for injury. The stroke has changed the life of Amazing Ben and has set up new milestones for him. We are grateful for his life and our chance to share the time that we have with him each and every day.
After all that Ben has been through he continues to amaze teachers of his high intelligence. He is at first grade level and continues to progress in a physically challenged way. Amazing Ben is growing up and he will continue to face challenges on a daily basis. He measures 29in and weighs 15lb. We know he will not grow much more in his life, but we know he can live for a very long time . He is bright and smart. We pray for the tools he needs to face this world. We wish for him to see the beauty at the ocean, the animals at the zoo, to be able to attend school one day soon. Without the use of technology that he will require to learn....his intelligence and his "will"to learn will go unknown. Right now Ben continues to be pushed in a stroller that cannot be raised so that he can sit at a table or be included in what is going on in his surrounding. At this age....his peers tower over him. He can operate a power chair.., and needs one . The power chairs are costly. He requires a very specialized fitting for a power chair and anything that he wears or rides in. His respiratory system is compromised. His chest /diaphragm is deformed from all of his rib fractures. He requires oxygen most of the time . His conversations with people are cut short at times due to limited air space to speak louder. Amazing Ben loves people and is very very social. Socializing and using his ipad is fun for him since his extremities are shorter then a newborn baby...which makes it impossible to enjoy "play". We will need to provide modifications for our home to accommodate his needs very soon. We do not have the funds for home modifications, especially with the endless medical bills. Insurance covers only so much.
For now our Amazing Ben continues to brighten our lives and brings smiles to ours and even to strangers. We will continue to pray for the tools that Ben needs to progress in education so that he will someday be an independent young man....known as Amazing Ben.
Amazing Ben not only suffers bone fractures but also lives with secondary issues. He has had multiple neuro surgeries for hydrocephalus and problems with Chiari Malformation. He was in the pediatric intensive care on his first and second birthday, and all of the holiday seasons. We flew him to the best neurosurgeons in the United States. He suffered a stroke this year in April at
UCLA Medical Center while surgeons tried closing the 7.5in gap of his skull that exposes his brain to the world and has a high risk for injury. The stroke has changed the life of Amazing Ben and has set up new milestones for him. We are grateful for his life and our chance to share the time that we have with him each and every day.
After all that Ben has been through he continues to amaze teachers of his high intelligence. He is at first grade level and continues to progress in a physically challenged way. Amazing Ben is growing up and he will continue to face challenges on a daily basis. He measures 29in and weighs 15lb. We know he will not grow much more in his life, but we know he can live for a very long time . He is bright and smart. We pray for the tools he needs to face this world. We wish for him to see the beauty at the ocean, the animals at the zoo, to be able to attend school one day soon. Without the use of technology that he will require to learn....his intelligence and his "will"to learn will go unknown. Right now Ben continues to be pushed in a stroller that cannot be raised so that he can sit at a table or be included in what is going on in his surrounding. At this age....his peers tower over him. He can operate a power chair.., and needs one . The power chairs are costly. He requires a very specialized fitting for a power chair and anything that he wears or rides in. His respiratory system is compromised. His chest /diaphragm is deformed from all of his rib fractures. He requires oxygen most of the time . His conversations with people are cut short at times due to limited air space to speak louder. Amazing Ben loves people and is very very social. Socializing and using his ipad is fun for him since his extremities are shorter then a newborn baby...which makes it impossible to enjoy "play". We will need to provide modifications for our home to accommodate his needs very soon. We do not have the funds for home modifications, especially with the endless medical bills. Insurance covers only so much.
For now our Amazing Ben continues to brighten our lives and brings smiles to ours and even to strangers. We will continue to pray for the tools that Ben needs to progress in education so that he will someday be an independent young man....known as Amazing Ben.
Organizer
Janet Ganding
Organizer
San Bernardino, CA
