Cole & The Worst Disease You've Never Heard Of
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“It’s the worst disease you’ve never heard of.”
16 years ago, Cole was born with a devastating and extremely rare genetic skin disorder called Epidermolysis Bullosa (EB), leaving him with no skin on his legs and feet, blisters on his mouth and fingers, and many complications at birth. It was completely unexpected and shocking, and we had no indication leading up to his arrival that anything was less than normal. But still, despite the fear and uncertainty, this tiny and sweet boy came out fighting.
He’s still fighting today.
EB patients are referred to as the “butterfly children” because of their delicate skin. Any friction, trauma, or heat can cause Cole’s skin to blister or fall off, and EB sufferers with Cole’s subtype - Recessive Dystrophic Epidermolysis Bullosa - have an average life expectancy of the early 20s.
It hasn’t been an easy journey for Cole, and he suffers immensely from this genetic, undetected skin disorder. In the last several years, his skin has contracted and webbed his hands and feet. His esophagus and mouth are tightened, and his mobility has been greatly diminished. Cole is now only able to walk a few feet without the use of his wheelchair and has very little use of his hands.
He needs constant wound care management and help to get through each day - the dressing changes alone take anywhere from 2-3 hours and must be done at least 3-4 times each week.
And still, Cole fights.
While we wish we could take every symptom away, we’re looking for ways to help make his fight a little easier. He’s earned it over and over again. We would love to provide a SafeStep Tub for him so that he can get in and out of the tub for his wound care soak while removing dead skin and helping reduce his elevated risk of skin cancer.
We are also requesting a lightweight Airhawk power chair that will allow us to easily transport him to all of his many necessary appointments and out-of-state treatments.
Cole has been a fighter since the day he was born. But even the strong need some help every once in a while, and this is Cole’s time. As his family, we would be very grateful for any assistance in providing our son with these items to make his life less painful. They would enhance his quality of life in so many ways - and anything we can do to increase his time and ease his discomfort is our purpose.
Please consider helping make Cole’s life more comfortable and his daily fight a little easier. Thank you for taking the time to read his story and for your support and prayers!
16 years ago, Cole was born with a devastating and extremely rare genetic skin disorder called Epidermolysis Bullosa (EB), leaving him with no skin on his legs and feet, blisters on his mouth and fingers, and many complications at birth. It was completely unexpected and shocking, and we had no indication leading up to his arrival that anything was less than normal. But still, despite the fear and uncertainty, this tiny and sweet boy came out fighting. He’s still fighting today.EB patients are referred to as the “butterfly children” because of their delicate skin. Any friction, trauma, or heat can cause Cole’s skin to blister or fall off, and EB sufferers with Cole’s subtype - Recessive Dystrophic Epidermolysis Bullosa - have an average life expectancy of the early 20s.
It hasn’t been an easy journey for Cole, and he suffers immensely from this genetic, undetected skin disorder. In the last several years, his skin has contracted and webbed his hands and feet. His esophagus and mouth are tightened, and his mobility has been greatly diminished. Cole is now only able to walk a few feet without the use of his wheelchair and has very little use of his hands. He needs constant wound care management and help to get through each day - the dressing changes alone take anywhere from 2-3 hours and must be done at least 3-4 times each week. And still, Cole fights. While we wish we could take every symptom away, we’re looking for ways to help make his fight a little easier. He’s earned it over and over again. We would love to provide a SafeStep Tub for him so that he can get in and out of the tub for his wound care soak while removing dead skin and helping reduce his elevated risk of skin cancer.
We are also requesting a lightweight Airhawk power chair that will allow us to easily transport him to all of his many necessary appointments and out-of-state treatments. Cole has been a fighter since the day he was born. But even the strong need some help every once in a while, and this is Cole’s time. As his family, we would be very grateful for any assistance in providing our son with these items to make his life less painful. They would enhance his quality of life in so many ways - and anything we can do to increase his time and ease his discomfort is our purpose.
Please consider helping make Cole’s life more comfortable and his daily fight a little easier. Thank you for taking the time to read his story and for your support and prayers!
Organizer
Jennifer Garland
Organizer
Middleburg, FL
