Because of You

I am not sure if you all have ever heard of the rare disease EB (Epidermolysis Bullosa)? It is a an inherited connective tissue disease causing blisters in the skin and mucosal membranes, with an incidence of 1/50,000. As a result, the skin is extremely fragile. Minor mechanical friction or trauma will separate the layers of the skin and form blisters. People with this condition have an increased risk of cancers of the skin, and many will eventually be diagnosed with it as a complication of the chronic damage done to the skin. In people born with EB, the two skin layers lack the protein anchors that hold them together, and any action that creates friction between the layers (like rubbing or pressure) will create blisters and painful sores. Sufferers of EB have compared the sores with third-degree burns.[2]"Butterfly Children" is a term often used to describe younger patients because the skin is said to be as fragile as a butterfly’s wings (taken from Wikpedia).

I follow TRIPP and JONAH'S stories and have for years. Both boys suffer from this disease. Tripp is 2 years old and he has the worst form of the disease. It has robbed him of his eyesight and so much more. His mom is amazing and dedicates every second of every day to caring for her son. She posted today "Because of You EB" and it is a powerful post. I will warn you - it is not easy to read. It really made me stop and thank God for giving me a healthy baby boy. It also makes me question why this baby has to suffer so much. Please lift this family up in prayer, especially Courtney. She is such an inspiration - but her son is even more of an inspiration. Even Elmo has written two songs for Tripp! Those songs can be found on her website as well.

Courtney wants to have a special Christmas tree for Tripp this year made up of ornaments from supporters and blog followers. Landon is going to be mailing his special friend, Tripp, an ornament next week. If you would like to donate an ornament for Tripp's tree, the information to do so is HERE.. The ornaments from Personalizedfree.com are of good quality and are super cute if you would like to buy one from the website Courtney features on her blog. 10% of the proceeds goes to DebRA to help fight EB.

Courtney's post will definitely make you hug your kiddos a little tighter tonight. God bless you Tripp and Courtney. Thank you in advance for your prayers and support.