Brenan
$5,000.00
| Type of Gift | Home Accessibility |
|---|---|
| Diagnosis | Cerebral Palsy, KCNQ2, Blind, Mute, Quadriplegic |
| Siblings | 1 |
| Gift Requested | Accessible home renovations |
| Price of Gift | $5,000.00 |
Why we requested this gift
As Bren has grown older and gotten bigger, we are in need of more space and a better means of transferring him from his chair to his bed, to changing area, and to the bathtub as we are finding it more and more difficult to lift him. We would like to extend our current bedroom area to accommodate his needs. The new space will have a bathtub that is handicapped accessible, a therapy table that will double as a changing station, and a lift system that will mount overhead for transfers back and forth to these areas and to his wheelchair! Any financial assistance to help with the modifications would be greatly appreciated!
Our story
It seemed that Brenan was born a healthy little boy on March 12, 2007, but just a few days later he had his first seizure. He spent the next 6 weeks in the hospital while doctors struggled to get his seizures under control. Having undergone a battery of tests, including EEGs, and an MRI all of which came back negative, the doctors remained baffled. Finally, after 10 years of seeing multiple doctors and doing tests that all produced negative results, Brenan’s neurologist referred him to a National Institute of Health Research Study where testing was done by a new-age supercomputer which performed over one billion matches, taking the computer around six months to complete all the tests. Positive results were sent to a human team for review at Emory University where they diagnosed Brenan with KCNQ2 Encephalopathy, an extremely rare form of epilepsy.
KCNQ2 encephalopathy, which has only recently been discovered, is a disease of seizures and significant developmental delays, caused by a rare mutation in the KCNQ2 gene. This gene is involved in the proper functioning of a potassium channel in the brain. Children with KCNQ2 encephalopathy have a broad range of motor and cognitive disabilities and low muscle tone, in addition to seizures, and all are unable to function independently. Brenan has severe developmental delay with no muscle control, he is legally blind in both eyes, he cannot talk or communicate in any way, and is totally dependent on caregivers 24/7.
The past three years have been extremely difficult for Brenan as he has been faced with multiple health issues resulting in seven surgeries. His growth along with puberty had caused his hips to become displaced which required multiple surgeries, followed by months of lying in bed in a body cast. Because of his inability to move in the body cast, GI issues soon followed with blockages that resulted in constant vomiting and poor nutrition. Doctors had no choice but to surgically insert a feeding G-tube to ensure Brenan gets the fluid, medicines, and food that he needs to survive. Today, he is struggling to feed through the tube as his body seems to be rejecting the formula at times. Doctors are looking at methods to correct this issue and hopefully will figure out a solution.
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