Baby Adrien, born 5-14-19 with Epidermolysis Bullosa (EB) severely painful, incurable rare genetic skin disease


Baby Adrien was born May 14, 2019, at Saint Joseph Hospital and immediately his parents knew something was wrong. He was missing skin on most of his limbs, covered in scary, deep red, open wounds. He came out screaming violently, his weak seven-pound, nine-ounce body shaking because of the unbearable pain. Saint Joseph hospital had never seen a case like this so he was transferred to CHOC a Children's Hospital, where the doctor had only seen 5 in his entire career. Baby Adrien was unable to even take a pacifier for comfort because the friction of it against his skin left his lips blistered immediately... so they had to put in a feeding tube and his mom will have to pump instead of nursing him. His pain was eventually controlled with a combination of morphine and Tylenol, and he is on antibiotics to try and prevent infection from his many open wounds. He is getting new blisters from being cleaned after he goes potty... and needs to be medicated to tolerate the pain of cleaning him up. Changing his bandages is also extremely painful and calls for more morphine. He is the worst case they have ever seen.
 
He was quickly diagnosed with a severe form of Epidermolysis Bullosa (EB). EB is a rare genetic skin disease (affecting only 1 out of 50,000 births). In this condition, there is a defect in the connective tissue of the skin and mucous membranes that causes the skin to be so fragile that the slightest friction, minor injury, heat, rubbing, or scratching causes severe blistering inside (such as the mouth, stomach, esophagus) and outside the body. These blisters can cause serious, sometimes fatal problems when they become infected. The systemic and repetitive nature of the blistering leads to blindness, swallowing and breathing difficulties, scarring, infection, disfigurement, disability, and dehydration. Ultimately, such devastating effects can produce a high rate of mortality. In fact, 87% of babies born with one of the more severe forms of EB do not live more than 12 months. There is NO cure for this horrific disease. Sufferers of EB have compared the sores with third-degree burns. They live in unthinkable pain.
 
With skin as fragile as butterfly wings, EB patients are dubbed “Butterfly Children." On the outside, physical wounds and limitations brought on by this disorder prevent them from normal daily activities enjoyed by other children. On the inside, their dreams are the same as any child who loves, plays, learns and grows despite the pain and impediment caused by their disease.
 
The following is what it’s like to be diagnosed with one of the more severe forms of EB:


Imagine…


a child with painful wounds similar to burns covering most of his or her body.
having to wrap each tiny little infant finger with Vaseline gauze and then cover it with gauze to prevent the hand from scarring, webbing and contracting.
never being able to hold your child tight because if you did, their skin would blister or shear off.
a child who will never know what it’s like to run, skip or jump, or to play games with other children because even the slightest physical contact will injure his or her skin.
a child who screams out each time it is bathed because the water touching its open wounds creates incredible pain.
a diet of only liquids or soft foods because blistering and scarring occur in the esophagus.
an active baby with his knees soaked in blood from the normal act of crawling.
a teenager with stumps for hands, the affected fingers scarred/healed together.
 
 
Adrien has 1 older Sister, Victoria and has two loving parents, Victor and Adriana. One cannot even begin to imagine what the parents must be going through. The shock of his diagnosis; the uncertainty of what his future holds; the heart-wrenching pain and feeling of helplessness at seeing their newborn baby hurting and not being able to hold him, nurse him, comfort him, or take away his pain.


Adrien's father works in a DJ event service. Because of the current circumstances, he will be out of work. He is taking a week or two off to help his wife as they transition home and learn to care for baby Adrien and their other daughter. His mom will not be able to work and her days will be dedicated to loving Adrien and his one sister, and the arduous and extensive care Adrien's illness will require.


His parents need to concentrate on caring for their fragile baby. I pray we can help relieve some of this financial burden so their sweet boy can have the medical supplies he needs to help ease that pain and try to keep his blistering under control, healing, and uninfected as much as possible.


Please help us in raising money to help save Adrien's life, to make Adrien's days on this Earth as painless as possible, to help his parents enjoy the days they have with their baby without the worry of how they will pay for his care and medical supplies. Please help u

Chad Catherine

Ryan McGann

Anonymous

Elizabeth May

Naom Oku Alonzo

Varda Jennifer Leger

Lisa A Leitz

Ana Maria Popp

ericka alonzo

Stephanie Centeno

John Kelly

Save Baby Adrien Battling Epidermolysis Bullosa

Save Baby Adrien Battling Epidermolysis Bullosa

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