In his Mama Courtney's words:
In another post, she writes:
"What gets me through each and every day is that one line from the poem "The Brave Little Soul": "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength." I have to trust that God is with him and that He is helping him bear this tremendous amount of pain, because I don't know how any child could possibly be this strong all alone. I talk with him every night... about God, about heaven, and about how Mommy will be okay (one day) if he is too tired and ready to go home to heaven.
But this kid is a fighter. Sometimes I just wish he wasn't so strong. My heart is aching for him to have some peace, however that my be."
and then, she shares this passage with us.....
"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the former things have passed away.”
I have followed his story and prayed for him and his mama and his grandparents as they struggle with his disease called Junctional Epidermolysis Bullosa. He faces a life of painful blisters, hair, nail, and major teeth issues, as well as the possibility of respiratory involvement.
Junctional Herlitz EB is a very severe form of EB. These infants often die during infancy due to overwhelming infection (sepsis), malnutrition, dehydration, electrolyte imbalance or complications resulting from blistering in the respiratory, gastrointestinal or genitourinary tract. Blistering is usually present at birth, however, there have been instances of infants being discharged to home, with a small blister on the finger or lip. After they are home, the blistering becomes more apparent warranting a visit to the physician. Skin blistering and ulcerations can occur spontaneously on the arms, hands, finger tips, back of the head, neck, shoulders, trunk, buttocks, legs and feet and toes (generalized distribution). Nails may be ulcerated or dystrophic. Warmer climates can exacerbate blistering. Blistering is noted on perioral (around the mouth) and mucosal surfaces as well. Oral lesions may affect eating causing weight loss.
Generalized blistering and mucosal involvement may be evident at birth or soon after. Blistering may be mild to severe. Erosions on finger and toenails, nail dystrophy or absence of nails may be evident. Erosions and loss of hair (alopecia) upon the scalp may occur. Granulation tissue around mouth and nares may be seen. There may be some scarring and thinning of the skin on affected areas (atrophic scarring).