Please help support Jeremy!  We will be selling handmade crafts to help raise funds to purchase a ”fun” wheelchair that the insurance does not cover.

Visit our store at 843 Payne Ave  North Tonawanda for Christmas gifts, ornaments, wreaths, trees and much, much more.


        


I finally got my special motorized wheelchair and a lift for my van so I can travel around with my family.  My lift was installed so I can get upstairs to my bedroom.  I also have an accessible bathroom so I can brush my teeth and take a shower without so much help.  Now I'm working toward a "fun" wheelchair that I can use at the beach, playground, grass or stones.

Any donations (cash or check) can be sent to:


Jeremy Baker
First Niagara Bank
2743 Main Street
Newfane, NY 14108

Any contribution is greatly appreciated.




Hi!  My name is Jeremy Baker.  I am 5 years old and I have Periventricular Leukomalacia (PVL) with Cerebral Palsy which affects my motor skills.  I have a twin brother, Evan and we were born at Sisters of Charity Hospital at 26 weeks.  I was 2lbs 15oz and Evan was 1lb 13oz.  I cannot walk and I have difficulties using my hands, but that doesn't stop me.  My mind works just fine.  I attend Kindergarten at Roy-Hart BOCES and I just love it.  I love to build with blocks, play with cars and play on my tablet.  I like to go camping with my family and Nana, getting in the swimming pool and the Jacuzzi tub to relax my muscles.  I love chocolate and driving my McQueen car that was adapted with a finger button so I can drive it.  I can't crawl, but I can roll around on the floor to get where I need to be.  I get physical therapy to work on strengthening my muscles, occupational therapy to help me use my hands and hippo therapy (horseback riding) to help me with my balance.  

What is Periventricular Leukomalacia?

Periventricular leukomalacia (PVL) is characterized by the death of the white matter of the brain due to softening of the brain tissue. It can affect fetuses or newborns; premature babies are at the greatest risk of the disorder. PVL is caused by a lack of oxygen or blood flow to the periventricular area of the brain, which results in the death or loss of brain tissue. The periventricular area-the area around the spaces in the brain called ventricles-contains nerve fibers that carry messages from the brain to the body's muscles. Although babies with PVL generally have no outward signs or symptoms of the disorder, they are at risk for motor disorders, delayed mental development, coordination problems, and vision and hearing impairments. PVL may be accompanied by a hemorrhage or bleeding in the periventricular-intraventricular area (the area around and inside the ventricles), and can lead to cerebral palsy. The disorder is diagnosed by ultrasound of the head.

Is there any treatment?

There is no specific treatment for PVL. Treatment is symptomatic and supportive. Children with PVL should receive regular medical screenings to determine appropriate interventions.

What is the prognosis?

The prognosis for individuals with PVL depends upon the severity of the brain damage. Some children exhibit fairly mild symptoms, while others have significant deficits and disabilities.

What research is being done?

The NINDS supports and conducts research on brain injuries such as PVL. Much of this research is aimed at finding ways to prevent and treat these disorders.

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