NO BABY BLISTERS MISSION STATEMENT
To save rare disease EB (Epidermolysis bullosa) and other medically neglected babies from blisters, skin loss, extreme pain, and death – sadly forgotten by other charities – like Mirachael and Lily.
80% SKIN LOSS: Social media sadly blocks us from showing you the actual truth hidden underneath the bandages. Mirachael and Lily both have severely painful and very deep blisters on 80% of their body due to genetic EB Blistering Skin Disease. Friction or pressure causes blisters making a good hug dangerous and deadly. Their wounds fuse with their bandages causing every bandage change to be terribly painful and bloody. Bandage removal rips their skin causing so much crying and bleeding that both have to have regular blood transfusions. It is a very traumatic event for Mirachael, Lily, and their moms. Mirachael and Lily are suffering every moment and fighting to survive.
IS NO BABY BLISTERS A LEGITIMATE ORGANIZATION?
Yes, our charity is a USA registered 501(c)(3) nonprofit as No Baby Blisters EIN 82-2743807 in good IRS standing. Your donations in the United States are tax-deductible in full or part. We proudly display our GuideStar Platinum Rating: www.guidestar.org/profile/82-2743807
WHAT IS EB?
EB (Epidermolysis bullosa) is a genetic blistering skin disease that causes a baby’s skin to blister and peel off, creating extreme pain and, in its most severe forms, leading to death. EB is caused by a genetic mutation that creates a very weak bond between the baby’s skin layers in the epidermis and dermis. Friction, pressure, and heat on the skin causes blisters and skin loss. Even a hug from mom or dad can cause life-threatening blisters and skin loss, and extreme pain that can’t be controlled even with our best medicines. EB affects both genders and ethnicities equally so it is a global, neglected problem.
WHY IS IT CALLED “THE WORST DISEASE YOU HAVE NEVER SEEN”?
EB babies are called Butterfly Children because their extremely fragile skin is like a butterfly’s wing. It easily blisters, peels off, and then becomes infected, causing inflamed, very slow-healing wounds that may never heal. The wounds can grow deeper causing greater pain and life-threatening infections and dehydration. EB babies often fail to grow and thrive because blisters on the lips and inside of the mouth make eating extremely painful. Severe EB creates constant extreme pain for the baby whose life is often tragically cut short—many babies born with EB do not see their first birthday celebration.
It is hard to know how to treat EB. The wounds—which can cover large areas of the baby’s tiny body— require dressings but changing those bandages can rip off additional pieces of skin and worsen the wound by making it deeper and larger. Even under the best conditions, changing dressings on these precious children is extraordinarily painful and unavoidable. EB babies can even start to cry when mom or dad enters the nursery room because the baby quickly identifies the parents as the “torturers” because of the painful bandage changes. It is heart breaking.
Parents who want to love and protect their precious children are submerged in a situation where they must inflict constant pain on a body that is already suffering. But it’s even worse. Blistering and infections of the fingers, toes, and nails can require repeated partial amputation surgeries to stop the infection from spreading. Every amputation causes terrible post-surgical pain. The raw unhealed skin between adjacent toes and fingers can fuse together creating “clubbed” hands and feet. Without fingers and toes, crawling, walking, and picking up a toy becomes impossible.
EB babies can spend most of their painful lives indoors wrapped in bandages like a butterfly’s cocoon –– instead of crawling, running, and playing outside with their family and friends. Simple things like sitting in a grandparent’s lap or eating ice cream or exploring the backyard are unknown to these poor children. They won’t walk or go to school or run through a sprinkler or enjoy the sort of childhood their families so want to give them.
Babies born with less severe forms of EB who live into young adulthood suffer extreme pain, scarring, itching and bullying because of their skin’s appearance. EB also causes deadly skin cancer in many of these young adults.
Parents suffer an unbelievable emotional burden because their EB baby is constantly crying tears of unrelenting pain. Imagine the heartbreak and devastation of not being able to stop the pain of your precious baby. These parents often feel guilty because EB is a genetic disease usually inherited from one or both parents. Besides the emotional devastation caused by EB, EB families can easily go bankrupt because one parent has to stop working and stay home full-time to care for the baby combined with the high medical costs of special bandages, doctor visits and surgical procedures. Not everything these EB babies need is covered by insurance.
Over 500,000 humans around the world are suffering or dying with EB right now. EB not only separates the baby’s skin but also separates the baby from the parents’ loving hugs. Hugs shouldn’t hurt so we will work tirelessly until we fund and find a full-body inside and outside cure to stop EB’s blisters, skin loss, extreme pain, and death.
Yes, EB is the worst disease most people have never seen.
WHAT CAN WE DO RIGHT NOW TO HELP EB BABIES?
First--we need to stop the pain and deaths of hundreds of thousands of babies and children with EB by donating to our Fast Cure Plan. Your donations are tax deductible. Rare genetic blistering skin diseases do not receive the same funding from the medical establishment as do more common lifestyle diseases like heart disease and smoking. Tragically, EB babies are routinely neglected by modern medicine research funding while their parents can only watch them suffer excruciating pain and death.
It is time for the neglect and injustice in medical funding to end.
Second—partner with us. No Baby Blisters is global movement of loving people who have joined together to save EB babies. We invite you to join us today. Your love and financial help can put an end to EB babies’ pain, suffering and death. These precious babies with their skin blistering off are fighting to stay alive and urgently need our help. Take a moment and imagine what your donation can do.
- Imagine your baby in extreme pain and there is nothing you or your doctor can do to help stop it.
- Imagine knowing that your baby may not live to celebrate the first birthday, or her/his teenage years due to infections or skin cancer.
- Imagine the painful daily bandage changes over large areas of your baby’s body.
- Imagine your baby crying every time you walk into the room because you are the one causing more pain with every bandage change.
- Imagine not being able to hold and hug your baby – because it could cause blisters, skin loss, extreme pain and infections.
- Imagine your baby not being able to crawl, walk or pick up a toy because the partial amputations and fusions of toes and fingers.
- Imagine the hungry cries of your baby, who cannot eat or drink enough due to blisters in the mouth, leading to malnutrition and slow physical development.
- Imagine your lack of hope because EB research is not being properly funded.
Third—make a commitment. EB babes have a terrible future unless we choose to end the neglect and injustice in medical funding.
We are already making a difference in many lives and with more committed partners, we can help today’s patients and cure this awful disease. Our goal is to find fast, efficient research strategies that will lead to real full-body inside and outside cures that will be made available either free or at affordable prices for these suffering families. Imagine EB babies escaping their cocoons of pain, suffering and death! With our Fast Cure Plan, we imagine a full-body inside and outside cure and great future is close. Our Fast Cure Plan includes:
- Systemic research to treat the entire body, not just the skin. A full-body systemic cure is needed.
- Gene therapy that will override mutated skin gene proteins with healthy gene proteins to stop the blistering and skin cancer. Healthy genes produce healthy skin proteins needed to keep the skin from blistering off.
- Molecular research using affordable natural ingredients that can reduce inflammation, itching, and speed skin healing.
Finally—educate yourself and your family and friends. Even if EB does not touch your life directly, we should all be moved by the suffering and hopelessness of the thousands of EB babies in the world. There are other organizations working on EB. Unfortunately, all of these potential cures would cost hundreds of thousands of dollars to millions for treatment that insurance likely would not cover for international children. We believe a full-body inside and outside cure should be affordable or free for all 500,000 EB sufferers and future EB babies. There are other ways to approach EB—with compassion—that can lead us to an affordable full-body inside and outside cure.
OUR URGENT PLEA FOR YOUR LOVE, YOUR COMPASSION, AND YOUR TAX-DEDUCTIBLE SUPPORT TODAY
EB babies should not suffer excruciating pain and early deaths. Their families should not be destroyed and bankrupted trying to get them help. They should grow, live, love and play like other children. BUT PLEASE HURRY. Every day is another day these babies must suffer and their parents must watch. We are asking for your tax-deductible donations to finalize our Fast Cure Plan. We need your love and financial help to:
- Find fast full-body inside and outside cures for EB, ways to provide life-changing and life-sustaining medical help that will stop their pain and suffering and allow them to grow up as normal children
- End the despair and suffering of EB parents who can do little besides watch their children suffer and die … sometimes before their very first birthday
- End the injustice in medical funding that often overlook so-called “orphan diseases”
- Help us create a full-body inside and outside cure that is safe, effective, and affordable so that no child with EB needs to suffer
- Fund the right researchers—those who own the intellectual property rights to create affordable full-body inside and outside cures that we can distribute (without going through big companies)
- Commit to our goal of finding free or affordable treatments so that no family is bankrupted by EB treatments (that do not even cure the full-body disease inside and outside)
- Support all of us fighting the war against EB—smart scientists, dedicated researchers, avid fundraisers, parents, physicians, nurses, caregivers. This is a battle we can win, if we fight together!
Will you love and financially help EB babies?
Please join No Baby Blisters to save EB babies from blisters, skin loss, extreme pain, and death today.
Thank you and God bless you!
THIS MONSTER DISEASE IS LITERALLY SKINNING OUR BABIES ALIVE LIKE BABY MIRACLE.
You can stop their pain and save their lives by becoming a HERO GUARDIAN ANGEL! Read how to be a real-life Hero below.
💟 A very special thanks to our HERO GUARDIAN ANGEL team because your Monthly donations save our children from pain and death.
Ashley made a special Thank You video for you. She suffers with EB Blistering Skin Disease, the worst dermatology disease.
Joyce made a special Thank You video for you. She suffers with 80% skin loss.
YOUR INVITATION TO BECOME A HERO GUARDIAN ANGEL if you are not already a monthly Donor...
WHAT DOES IT MEAN TO BE A HERO GUARDIAN ANGEL?
You have a heroic, immediate, life-saving impact by guarding over the lives of our sickest and dying children making sure they NEVER run out of pain medication, bandages, and antibiotics with a small monthly donation as little as $3 each month. You achieve victory after victory for our children with 80% skin loss. EB Blistering Skin Disease never quits hurting and trying to kill our children, so our HERO GUARDIAN ANGELS never quit!
OUR GUARANTEE YOUR DONATION WILL HELP!
Our Donors are the only ones helping our medically neglected children dying in severe pain. We deliver monthly funds directly to our children, so your donations are guaranteed to help stop pain and death.
YES! I WANT TO STOP THE SEVERE PAIN AND DEATH OF THESE PRECIOUS CHILDREN. HOW DO I START?
If you are not already a monthly Donor, we invite you to achieve life-saving victories as part of our HERO GUARDIAN ANGEL exclusive team by donating as little as a small $3 per month. Click here to start stopping pain and saving lives today as a HERO GUARDIAN ANGEL. Simply select the "Custom Amount" option at the bottom of our donation form to choose the monthly amount that works best for you, or one of the pre-selected line-items.
OUR MEDICAL EXPERTS ENSURE YOUR VICTORIES!
Our Medical Experts, because of your heroic love and generosity, will ensure our sweet babies always immediately receive their monthly life-saving pain medications and innovative medical care and supplies.
YOUR IMPACT STOPS PAIN AND SAVES LIVES LIKE BABY JESÚS. HOW?
GREAT NEWS! You can save our innocent, forgotten and medically neglected children, from miserable, painful daily lives by donating as little as $3 a month. Any amount makes a huge impact.
Our good-hearted, compassionate and loving community of monthly Donors, called our HERO GUARDIAN ANGEL team, believe we are noble guardian angels of mercy for the forgotten, medically neglected children. Working together, we guard the lives of the sickest, most disadvantaged children in the world, struggling in pain to stay alive.
We are committed to do everything possible to NEVER let them run out of severe pain medicine, life-saving surgeries, medical supplies and wound-healing food that reduce their pain and suffering.
Because our children's only hope is great-hearted Donors just like you, will you become their HERO GUARDIAN ANGEL right now to reduce their severe pain and help save their lives by donating monthly?
Click to choose a Monthly donation plan to save our babies from pain and death, and join more than 500,000 loving, compassionate Donors! If you are already a monthly Donor, we can't say thank you enough.