Wednesday, February 9, 2011


My mind has been on Tripp lately. I have followed the stories of a couple of babies who have a condition called Junctional Epidermolysis Bullosa.

I have followed his story and prayed for him and his parents 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.

JEB is an autosomal recessive condition. This means both parents are healthy carriers. Healthy carriers are non-symptomatic and will never develop the illness. When each parent has a copy of the altered gene, there is a 25% or 1 in 4 chance the child will be affected by Junctional EB. Unfortunately, there is no test to detect carriers for JEB. We are made aware that the parents are carriers after the child is born.

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).
The infant may suffer complications such as infection, dehydration, electrolyte imbalances, respiratory, gastrointestinal, and/or genitourinary tract involvement. These complications may lead to death.


This is a part of statements written by his mama...

"Maybe by a thread... but still hanging. My little trooper is still fighting so hard. He's been having good days and bad days, very inconsistently. And a good day is defined by standing up in his little 5x5 area and playing with his toys for about 15 minutes at a time. The biggest issues right now would have to be his eyes, his mouth, and his trach/breathing. And bath... I won't even go there. Terrible.

His eyes are just beyond horrible... there are no words. And they are only getting worse by the day... literally. He's becoming a little more frustrated as it gets harder for him to see each day. You can tell by the way he reaches for things, and brings his toys all the way to the corner of his left eye to be able to see it. Like I said before, the eye doctor said that his right eye already has half the vision of his left... and both eyes (the left one worse) have granulation tissue growing over his eyeball. The right eye is more than half-way covered. I've put a call in the the eye doctor... not really even knowing what I'm going to ask, but just making sure with him one more time that we have no other options. For this poor child to lose his vision along with everything else going on, is just borderline cruel.

His mouth just kills me. He's had teeth since he was about 3 months old. Imgaine how it would feel if you had never brushed your teeth for almost 2 years. I really just can't imagine how his poor mouth feels. Then on top of just "feeling yucky," he's got sores covering his lips and tongue. Not to mention, that he must have cavities and rotting teeth in there that I'm sure is painful. I fully understand the dentisit's concerns about putting him out and trying to do something with his mouth. It's somewhat the same deal as the eyes... if you irritate any of the mucous membrane tissue, it becomes raw and can fuse to any other surface. There have been cases in other EB babies, where after dental work, their mouth has been fused together completely, with tissue sloughed off in places. I'm not thinking I want to go there. I just wish there was something we could do. I've been using Biotene spray- but you can imagine how he loves that."

"I worked as a nurse in geriatric/psychiatric. I loved and miss my job, but now that my precious boy is born, I am a 24/7 stay at home Mommy. I dedicate every second of my life to Tripp and I treasure every second that we have together. Though caring for him is a very tough job, I would not trade any of it for a second. Tripp has taught me true love, patience, respect and selflessness. Being a Mommy has changed my life, but being TRIPP'S Mommy has brought so much joy and happiness into my life. I am entrusting Tripp's life into God's hands. He knows best. May His will be done-not mine. "

A Special Child

You weren’t like otherchildren,
And God was well aware,
You’d need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven’t been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We’re proud that we’ve been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who’s taught us many things,
But most of all- “Real Love”

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