Name: Corey Coil

Location: Napa Valley, California USA

Form of EB: Recessive Dystrophic, Hallopeau Siemens subtype

Birthdate: October 18, 1992

Parents: Sheri and Leland Coil

Siblings: Alex and Brandi, RDEB-HS - Robert and Tamar, EB free

More About Corey:
Corey was born with an absence of skin from his thighs down. By the time he came to us, he had an absence of skin over 75% or more of his body, his hands were mittened and clubbed, and he had no toes. His mouth was reduced in size (microstomatic) and his tongue was adhered to the floor of his mouth from the blistering. He had all the infections he could have and was in the hospital at Stanford for wound management. He had been living in a car.
The day we picked him up, he started throwing up in the car on the way home. He had flu. Within forty eight hours he was dehydrated. The ER could not find any veins large enough to get an iv in and after hours, the doctor got very upset and put it into Corey’s jugular vein and TAPED it down. They transported him back to Stanford where he stayed for another week.
He almost didn’t make it. And they did not expect him to live in the first place, so he was on very shaky ground. But we fooled them all. By eighteen months, he had syndactilly release on his left hand by Dr. Amy Ladd. We were working on our wrapping stuff and managed to retrieve the right hand via bandaging. He had gained weight and was clearing up.
He was such a good little guy to work with. He wanted us to sing to him all the time we were doing bandaging and bathing. Our favorites were rubber ducky, Kokomo, and the music video “It’s not easy being green” (starring Kermit). But he was pretty withdrawn for a long time...
Six years later, he is a different boy. He is in first grade and attends a regular school five days a week – all day. He is funny and much more outgoing. He has healed up much of his body, having less than 20% breakdown at any one time. He has had a power chair since he was three and could put it where ever he wanted it after the first time he really tried to drive it himself. He will take it out on the farm to where ever he wants to be and then gets out to play, getting back onboard to get to the next place. We are always having to go out and get him unstuck from some hole or rut.
He loves the trampoline and riding his bike too. It is so funny to see him ride the chair out to the trampoline, use it to climb up onto the trampoline, and then bounce. He is crazy over motorcycles, legos, and of course the latest rage – pokemon. He says his favorite foods are fruit loops, pizza, applesauce, peanut butter and jelly, grilled cheese, cheese tortilla (quesadilla) ice cream, pumpkin pie, whipped cream. His current favorite movie is “Jingle all the way” with Turbo-Man toy!
He has had six esophageal dilatation to open up his esophagus. His ability to swallow food is doing very well and seems to be holding for now. He just had a bilateral sydactally release – one half inch in each web space (only a half inch in 6 years is not bad for a boy who had lost all web space by a year) and a bit of finger straightening. His hands were still in casts for his birthday and he was so cute opening his presents. He pinned them between his “hands’’ and ripped the paper with his teeth.
Corey started attending an early intervention preschool program when he first came to us. At first was only two days a week, then four days a week, in the mornings only. His last year of preschool was spent in a Head Start full inclusion classroom. Then started to attend the same school as our middle two and three of our grandkids. It is a small country school with 17 or 18 in each classroom. He also has a full time aide to assist him when he needs it.
His little brother Alex started Kindergarten there this year, so there are two Corey's there now, as one little guy put it the first time he saw the two of them together. The school is a technologically orientated one so he has lots of keyboard time and the school has now ordered him this special keyboard for word processing that he can type into at his desk, push a button when ready, and cordlessly, it will print out on one of the classroom printers.
His fingers are so fragile that he has trouble using a pencil. He does better with felt tip pens, but it is still hard on his hands. He has these cool special scissors mounted on a board for cutting that he only needs to push down on to cut while he guides the paper through with his other hand.
His personality has bloomed this year. He has become a real showman with a very funny sense of humor. He likes to get up little theater acts with his brothers and sisters. (Some of them take dance and do theater, so they have great imaginations) He loves to have his big sister, Lana, help him with his homework every night and read to him.

This is our Corey. Kind of a Cinderfella story, but far from being over yet. He has many hills and mountains to climb in his life, but has come over so many already that we know he will continue to be successful – by the Grace of God! We are proud of him and Love him very much.

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