My name is Kari Rogers and my grandson Gunner King was born in December with a rare genetic skin disease called Epidermylosis Bullosa (EB) "the worst disease you've never heard of". Only 1 in 50,000 live births are affected by this horrible condition. With skin as fragile as a butterfly wing, EB patients are often dubbed "butterfly children". There is no cure or treatment only pain management, daily wound care and bandaging.
EB Awareness week is October 25th - 31st.
Gunner Ray King was born December 14th, 2011 to Emily & Cody King. When he was born he had a raw spot on his right cheek, parts of his skin on his lips were missing, and some scratches on his head. The doctors wouldn't let his parents hold him and took him immediately to NICU. Cody was able to go to NICU with Gunner and it was during this time that a physician, nurses, and a nurse from another hospital told Emily that Gunner's feet, hands, wrists, ankles and parts of his chest were raw with no skin at all and they had to put in an umbilical line. The physician said Gunner would need to be transferred immediately to another hospital that had a higher level NICU. Noone could tell us what was going on with Gunner because they had never seen anything like this!!
Emily was released the next morning and was able to join Gunner in NICU. It was then that a dermatologist told them that Gunner had a genetic skin condition called Epidermolysis Bullosa (EB). He was in so much pain and on morphine. The dermatologist gave them a piece of paper with www.debra.org on it. This is the foundation website.
Minutes before they were to do Gunner's first bandage changes they watched a youtube video of an EB mom changing her child's bandages. How scary is that to know that the people you are depending on to care for your child don't even know what to do. The nurses/doctors were constantly in contact with Standford University and Cincinatti Children's Hospital trying to determine what they needed to do for his care (these are the other two EB Clinics in the country).
A skin biopsy was taken and sent to Standford University in California to determine the type of EB Gunner had - Recessive Dystrophic Epidermolysis Bullosa (RDEB). RDEB is an autosomal recessive inherited condition. This means both parents are carriers, yet they are unaffected. When each parent has a copy of the altered gene, there is a 1 in 4 chance that the child will be afffected. Unfortunately, there is no test to detect carriers for RDEB.
Blistering onset is at birth or soon afterwards. Therre is widespread scarring and deformity. Fingers and toes may become immobile. With recurrent scarring, fingerse and/or toes may fuse together. Hands and arms may become fixed in a flex position with resulting contractures. There is usually loss of the nails of the fingers and toes.
Gunner currently has fusion on both feet in between the big toes and second toes. He has no fusion of the hands. Gunners feet and mouth are the worst areas affected. He has only one pinky nail and a ring finger nail on the other hand. But the nails will grow and then fall right back off again, it is a never ending cycle. But his EB is generalized, meaning he can blister all over the body.
Having the right supplies and products to care for Gunner on a daily basis is crucial. They have to change bandages on Gunner every day to prevent any type of infection that could invade his wounds or body. When they brougth Gunner home they were sent a good stock of supplies from Debra Wound Care Clearinghouse, they were told about a company called National Rehab.
National Rehab did all the "dirty work" with the insurance company getting all of Gunner's things covered. If the insurance denied any supplies, their representative Bill was sending them the papers right back and explaining the importance. Soon, everything was covered. Now every month Bill calls them to ask what they need for the month. It is usually sent to them within two days.
The cost of bandages monthly is between $2,000-$2,500. While National Rehab provides them with supplies they are beginning to run out at the end of the month and having to purchase more supplies. One of the bandages Gunner has to have is Mepilextransfer 8x20 sheet and it costs around $45 for ONE!!!!
There is a genetic test that Gunner needs to find out the sub-type of his EB. As of now insurance doesn't cover the test and it costs over $6,000. The test is pertinent for Gunner's future care and decisions that Cody & Emily will face.
This is the reason I am trying to raise awareness and start a fundraiser to benefit Gunner's medical needs. I know that we all appreciate your support and donations.
Kari Rogers and Family