Our EB Babies Depend On You to Live
“PLEASE HELP ME. I need your help for my son to survive." -Baby John's Father
The father’s depressed plea rang out. His son Baby John, not yet three days old, lay suffering in a bed with severely painful blisters and gaping wounds that threatened his very life. These were bloody blisters and wounds the father could neither heal nor stop from emerging on his son’s tiny face and body time and time again. Time was running out.
"The blister wound on his leg is the worst without any skin from his ribs all the way down to the tips of his toes."
When Baby John was born, his parents learned he had EB. They had never heard of the disease. Now immersed in their own daily struggle and nightmare, they are all too familiar with the heartbreak that accompanies it: constant cries of pain, emerging blisters on the baby’s face, head, chest, arms, hands, fingers, legs, feet, and toes, a lack of weight gain due to bloody mouth, tongue and gum sores, and, reopened and bleeding wounds at every painful bandage change. And, for Baby John, the disease is getting worse every day.
"It's so painful to see as parents. I have to hold Baby John down so my weeping wife can change his bandages while we watch him bleed, hurt and cry. We feel helpless and numb."
The infant had been in the hospital three weeks in excruciating pain when the father’s desperate cry came to No Baby Blisters. Of critical concern was the huge wound on the child’s right leg that had no skin from the infant’s lower ribs to his toes. With no access to the type of ointments and advanced bandages that could temporarily help, the father was concerned for his son’s life. Every bandage changed tore more skin away enlarging the wound increasing the risk of death from infection and dehydration. The distraught father knew the danger this wound posed. He prayed for help.
That help came. Thanks to the generous support of our donors, No Baby Blisters was able to immediately send Baby John’s father the much-needed funds for ointments and advanced bandages that saved his son’s leg, which saved his very life!
But Baby John's battle for life is far from over. He lives trapped in special bandages and can't walk now at the age of 18 months. He will NEVER walk until we find a cure for EB.
Baby John’s father said he is now in a waiting game—waiting to see what toll this disease will take on his son next. His blisters, pain, and skin loss continue putting his life at risk. His toes have fused together. At No Baby Blisters, we are working tirelessly, so that what comes next for Baby John and his family is a cure. Baby John and the other 500,000 children suffering from EB around the world deserve a life free of pain and full of hope.
“We are praying for a miracle because he's crying in pain. A cure is necessary for all babies suffering from EB’s cruel pain,” said Baby John’s father. "I will do everything possible to cure my son. I got a second job now working 16 hours a day to help pay the medical expenses. I'm looking forward to No Baby Blisters help and close interest in my son's pain relief and cure."
EB disease is terrifying. Please help any way that you can. Positive life-saving work is already being done with your help until we find a cure. Let us continue to help Baby John and others like him. Finding a life-saving cure is urgent. Thank you for your generous donations.
If you can donate monthly, it will immediately provide critical ongoing needed funds to accelerate our expert medical research for a cure for EB disease.
Your Donations Literally Saves Lives
This is the leg of Baby John. Your tax-deductible donations immediately sent him life-saving bandages and ointments to save his life until our experts can find a cure for EB blistering skin disease. Right now there is no cure for EB, so Baby John is still fighting for his life in severe pain. Your donation today will instantly accelerate our Fast Cure Plan research for this terrible disease. In severe cases, babies born with EB do not live to celebrate their first birthday. Together, we can change this. This difference in Baby John’s leg is dramatic — and we can do this more often and better with your help! Join us to find a cure. And if you’ve ever wondered if your donation “makes a difference,” look at Baby John. It does! Other EB babies in pain are immediately waiting clean bandages, ointments, and a cure – possible only because of your generous donations.
EB is the Worst Disease You Have Never Seen
This is tough to watch but these babies need our help. Life expectancy for those who do live is often less than 30 years and filled with blistering, terrible pain, infections, scarring, itching, amputations, bullying, and catastrophic medical bills. Jonathan Pitre (June 2, 2000 – April 4, 2018) was born with a rare genetic mutation called recessive dystrophic epidermolysis bullosa (RDEB), which causes external and internal blistering across the body. He passed with septic shock. Jonathan is a hero among the EB support and research community with an inspiring legacy that will never end. Watch his story now.
What is EB?
EB babies suffer with blisters, skin loss, extreme pain, and death.
In EB's most severe form, many babies don't live to celebrate their first birthday
EB (epidermolysis bullosa) is a genetic blistering skin disease that causes a baby’s skin to blister and peel off creating extreme pain and death in its most severe forms. EB is caused by a gene 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 with our best medicines. EB affects both genders and all ethnicities equally. It is not getting the attention it needs to find a cure.
No Baby Blisters is the voice for over half a million babies, children, and young adults worldwide suffering from EB (Epidermolysis Bullosa)
Help us rescue EB babies from the terrible pain and death caused by EB. Mutated genes cause the skin to blister off resulting in extreme pain, infection, scarring, amputations, and death. A cure is urgently needed. *Pictured is No Baby Blisters' spokesperson Baby John
In EB's most severe form, many babies don't live beyond a year
Life expectancy for those who do live is often less than 30 years and filled with blistering, terrible pain, infections, scarring, itching, amputations, bullying, and catastrophic medical bills.
Like a butterfly's wings, their skin is so fragile, a simple touch can cause severe pain. Hugs shouldn't hurt
Easily injured skin creates severe pain, blisters, infection, and scars. Forever bandaged, their skin is an inescapable cocoon separating them from their parents' loving hugs. *Pictured is No Baby Blisters' spokesperson Baby Mary.
Why hasn't this disease been cured?
Orphan diseases are conditions affecting fewer than 200,000 people nationwide, like EB, Cystic Fibrosis, Lou Gehrig's Disease, or Tourette Syndrome.* Cures for orphan diseases, like EB, go unfunded by big pharma and government.
*National Institutes of Health
No Baby Blisters Offers great hope in its multimodal Fast Cure Plan
Our research team includes the medical field's top doctors, pioneering researchers, scientific innovators, and FDA experts to create an affordable EB cure to end the pain and death.
Our Dedicated Doctors
Aaron Tabor, MD
Aaron Tabor, MD, Founder of No Baby Blisters, is an NIH-funded skin researcher. He is also the Founder and CEO of GENIE Therapeutics, a biotechnology company developing cures for skin scarring, pigmentation and wrinkles.
Bernard Cohen, MD
Bernard Cohen, MD, is a Professor of Pediatrics and Dermatology, boarded in Pediatrics, Dermatology, and Pediatric Dermatology at one of American's leading hospitals with a special interest and research in Epidermolysis Bullosa (EB) blistering skin disease and skin infections.
Our Passionate Staff
Executive Director of No Baby Blisters
Tyler Falwell is using the latest technology to obtain the donations for our Fast Cure Plan from people, organizations and businesses, crowdfunding and peer-to-peer campaigns. He also oversees our grant process and venture philanthropy for recurring donation streams.
East Coast Communications Director, New York
Mari White is a two-time Emmy Award-winning TV host, model, actress and a multi-award winning producer. She has graced the cover of multiple magazines, been featured in numerous print ads, walked fashion week runways, and appeared in multiple films, shows, and commercials. As a versatile host, her credits range from Monday Night Football with ESPN to the first-ever live online morning show, AOL Rise.
West Coast Communications Director, Los Angeles
Sally Colon brings to No Baby Blisters 20 years of broad-based knowledge of the entertainment industry. Her feature documentary, "Women Like Us," was an official selection at the 2017 Los Angeles Women's International Film Festival.
Our Fast Cure Plan
- Gene therapy that will override mutated skin genes with healthy ones to stop the blistering and skin cancer.
- Biotechnology that will replace mutated skin genes with healthy genes. Healthy genes produce healthy skin proteins needed to keep the skin from blistering off.
- Molecular research that can reduce inflammation and speed healing.
Other's studies have failed in critical ways
Our goal is to create an affordable cure which means we need to get FDA clearance and possess the intellectual property rights to the cure. A lot of EB work to date was done by scientific teams who lacked experience with the FDA approval process and intellectual property. Their studies were too small for the FDA to use. These individuals meant well but they did not advance us toward the cure. In fact, a lot of the time, effort, energy, and hope was wasted.
From this early work, we know that there may be ways to cure EB with treatments that could cost over $2 million per patient. That is not acceptable to us. There are half a million people suffering from this disease and the cure has to be a safe, effective, and affordable.
No Baby Blisters is committed to getting this cure through the FDA and to these patients fast and at an affordable price.
What sets our Doctors and Fast Cure Plan apart from others' failures?
- Proven experts at performing meaningful, broad-spectrum studies that are affordable cures
- In-depth experience navigating FDA-approval pathways to market-ready treatments
- Research has already started with Dr. Cohen, Professor of Dermatology at a #1 leading hospital
Our Challenge: A Fast Cure for EB babies suffering and dying
- Securing $10 million in research donations for our Fast Cure Plan
- Inviting family, friends, and colleagues to help
- Raising public awareness and social media support
How can we expedite the Cure to stop EB pain and death?
We must all partner together and join corporations, organizations, and other individuals who are able to donate research funds (even small amounts help!) to our Fast Cure Plan to end this heart-wrenching disease. Will you join us? Can we count on you to help EB babies?
View the terrible pain and death caused by EB
Jonathan Pitre's Journey with EB
Powerful video of Jonathan Pitre who suffered from EB. People who watched this video described him as a "brave young boy" who "does not deserve the pain and suffering"
Jonathan Pitre Tribute (2000-2018)
Jonathan Pitre was for many the face of EB, as someone who suffered from a great deal of pain yet maintained a positive outlook no matter how bleak the outcome looked. For many, including No Baby Blisters, stories like Jonathan's is why we will not stop until the suffering ends with a cure.
SportsCenter Tribute to Jonathan Pitre
14-year-old Jonathan Pitre is an avid hockey fan who suffers from Epidermolysis Bullosa, one of the most painful conditions known to modern medicine. But his courage and determination to live is unlike anything in sports.
What is EB?
EB babies suffer with skin cancer, blisters, skin loss, extreme pain, and death.
Help us rescue EB babies from terrible pain and death
Your Donation Literally Saves Lives!
This is the leg of Baby John. Your tax-deductible donations sent him life-saving bandages and ointments to save his life until we can find a cure for EB. Right now there is no cure for EB, so Baby John is still fighting for his life in severe pain. Your donation today will accelerate our Fast Cure Plan research for this terrible disease. In the most severe cases, babies born with EB do not live to celebrate their first birthday. Together, we can change this. This difference in Baby John’s leg is dramatic — and we can do this more often and better with your help! Join us to find an EB cure. And if you’ve ever wondered if your donation “makes a difference,” look at Baby John. It does!
Our Logo's Meaning
The butterfly escaping its cocoon represents an EB cure empowering EB babies to escape their bandages, pain and death to live normal healthy, happy lives.