Jackson's Story

Recently, I've been in contact with a high school friend of mine who asked me to pass along some information about a very special 2 year old boy in his life. If you could just take some time to read about Jackson and maybe pass this along, I'd be incredibly thankful.

Jackson has a very rare skin disease, about 50 out of 1 million child births are diagnosed with generic EB with only 5% of them having Jackson's condition.

Epidermolysis Bullosa is a group of genetic conditions that cause the skin to be very fragile and to blister easily. Blisters and skin erosions form in response to minor injury or friction, such as rubbing or scratching. The signs and symptoms of this condition vary widely among affected individuals. In mild cases, blistering may primarily affect the hands, feet, knees, and elbows. Severe cases of this condition involve widespread blistering that can lead to vision loss, disfigurement, and other serious medical problems.

Researchers classify dystrophic epidermolysis bullosa into three major types. Although the types differ in severity, their features overlap significantly and they are caused by mutations in the same gene.

Autosomal recessive dystrophic epidermolysis bullosa, Hallopeau-Siemens type (RDEB-HS) is the most severe, classic form of the condition and is what Jackson suffers from. Affected infants are typically born with widespread blistering and areas of missing skin. Most often, blisters are present over the whole body and affect mucous membranes such as the moist lining of the mouth and digestive tract. As the blisters heal, they result in severe scarring. Scarring in the mouth and esophagus can make it difficult to chew and swallow food, leading to chronic malnutrition and slow growth.

Additional complications of progressive scarring can include fusion of the fingers and toes, loss of fingernails and toenails, joint deformities that restrict movement, and eye inflammation leading to vision loss. Jackson will eventually have webbed feet and hands and his armpits could even fuse together. He is completely “mummified” with bandages to prevent his skin from rubbing off.

Sadly, Jackson is in need of a few items that insurance will not cover. His parents have created a Save Jax fundraiser on an online fundraiser site known as razoo.com

Jax’s personal site is: https://www.razoo.com/br/causes/Savejax-Holiday-Fundraiser in which people can donate money directly to him.You can donate any denomination, which will directly help Jackson's family buy him the items he’s in need of.

Jax's family also has sites set up for “Jackson’s Story” at http://www.savejax.org/ and https://www.facebook.com/savejax

Just passing this along could really help Jackson and his family. Thanks guys.