PLEASE HELP ME. I need your help for my son to survive. We are praying for a miracle because he’s crying in pain. I am really afraid of losing him. -Baby John's Father
This is the most heartbreaking letter that parents can ever write, but here we are telling you the story of our baby boy John.
Today is 1 year, 8 months, 6 days since our family’s world was shattered. Our sweet baby boy, John, was born without skin on large parts of his body. Our son, not 3 days old, lay suffering in a hospital intensive care unit bed with severely painful blisters and gaping wounds that threatened his life. The blister wound on his right leg was the worst without any skin from his ribs all the way down to the tips of his toes. He was not expected to live. These were bloody blisters and wounds that I was powerless to heal or stop emerging on his tiny face and body time and time again. Time was running out for him. My wife and I learned that our son had been born with a rare genetic blistering skin disease “EB” (epidermolysis bullosa). We had never heard of this cruel disease (causing paper-thin fragile skin that blisters and rips off — sometimes called “butterfly skin”). John had been in the hospital for three weeks in excruciating pain when in a desperate cry I wrote No Baby Blisters and Dr. Tabor at Jesus Daily, “PLEASE HELP ME. I need your help for my son to survive.” I was depressed as I reached out for help.
We were immediately immersed in a daily struggle and nightmare, and heartbreak with our son’s constant cries of pain, and constant new blisters on John’s face, head, chest, arms, hands, fingers, legs, feet and toes. He also could not gain weight due to a bloody mouth with blisters on his lips, tongue and gums. The blisters reopened and started bleeding with every painful bandage change. His pain and disease got worse every day.
It is so painful for us as parents to see our baby suffer. At home, I have to hold down our baby so my weeping wife can change his bandages while we watch him bleed, hurt and cry. We feel helpless and numb. With no access to the right type of ointments and advanced bandages that could temporarily help him, we were concerned for our son’s life. Of critical concern still was his huge wound on his right leg that had no skin from the lower rib down to his toes. Every bandage change using the wrong type of bandages, tore more skin away enlarging the wound and increasing his risk of death from infection and dehydration. Distraught, and knowing the danger this wound posed, we prayed for help. That help came thanks from the generous donors of No Baby Blisters and Jesus Daily. We were able to use your donations to immediately buy the right ointments and advanced bandages from Japan and Australia. This saved our son’s leg, which saved his very life.
As time goes on, we are praying for a miracle because of John’s crying in pain. A cure is necessary for all babies suffering from EB’s cruel pain. I will do everything possible to cure my son. I got a second job now working 16 hours a day to help pay our medical expenses. My wife has to be at home as our son needs a person watching him 24 hours.
If you can hear my depressed voice, I need your help for John to survive and reduce his pain as much as possible. It’s bad news that he's getting more skin blisters and blood bubbles on his leg, head and deep in his throat that make him cry a lot. His disease is getting worse daily. His skin is still in serious condition and he has not gained much weight. Please help us if possible. I have no life vest to help my son.
Please keep praying for John. That will make my wife and I more encouraged to fight this disease with him. We are trying to take care of him as good as possible, buying good bandages and food for him to reduce pain and gain weight. We are so busy now taking care of my son. Changing his bandages takes hours.
My wife still cries when we change his bandages every 2 days because she watches him bleeding or crying. I have to hold John’s legs and hands, and encourage my wife during every bandage change. We still believe that God can save us soon by allowing doctors to find out a cure for this disease. I am really afraid of losing him.
John’s current situation is:
1 year, 8 months and 6 days old
Weight: 19.8 pounds
Has not walked yet (his toes are fused together from the blisters scarring)
Has not spoken words yet
Has only 8 teeth
His right leg wound is better but still serious
He gets serious constipation that we don't know how to help him get rid of although we feed him a lot of vegetables.
I just wish there was a cure for EB soon so babies don't have to suffer from pain, itchiness, and infection anymore. It will be really good news if your research will cure our son. We are waiting for any treatment in the near future. We so appreciate your efforts to find a cure for this disease.
May God help you to find it soon so all EB patients will not suffer from pain anymore. I believe in God strongly that He has his own plan for my family. When our challenges are over, happiness and peace will come. God sometimes sends someone to help us like He sent you to support my family.
Frankly, I feel so sorry to ask for your financial support, but it is a big help to take care of my son. We highly appreciate your financial support so much and promise to take care of John as good as possible with the money you give.
God bless you always to be healthy and happy. Thank you so much for your kindness.
Many thanks and best regards!
Thang, Hoan, and Baby John 👼🏻
PLEASE DONATE MONTHLY BECAUSE YOU CAN FUND SO MUCH RESEARCH FASTER SO BABY JOHN AND 500,000 OTHERS CAN BE CURED!
PROMISING, EXCITING research to save Baby John and others with an EB cure has already started because of our donors, but we need your life-saving, tax-deductible gifts to progress faster. We must also continue to help Baby John get the right ointments and bandages to survive and reduce his pain.
If God puts it on your heart to help find a cure and stop Baby John’s pain, please consider the “Monthly Donation” option so we can accelerate our research speed. We suggest $19 monthly to make a real impact.
Today, all gifts count DOUBLE. When you donate now to help save Baby John and other EB babies from blisters, severe pain and suffering, skin cancer, and death, it will be matched up to $10,000. All gifts are tax-deductible.
No child deserves to die, all children deserve to live and make this world a better place!
Due to the deadly nature of Baby John’s EB, we are racing against time and appealing to our Fans, Followers, Family, Friends, local and global community to raise funds to research Baby John’s cure, and a cure for hundreds of thousands of others suffering and dying from EB.
Is it impossible to believe that our donations could cure Baby John and EB? No! Can God use us together to fund and discover a cure? Yes! We can do great and mighty things together with God!
We pray God will bless your family’s health for donating, sharing, tagging Friends in Comments, and clicking to invite others to this fundraiser so we can find a cure faster to end EB’s pain and suffering. The more people that donate, share, tag and invite Friends, the more people that see Baby John’s story and can join us on this journey. Our eyes are on the cure. We can’t heal and save EB babies without you. The burden and pain in his mom and dad’s hearts can’t be adequately expressed in words, but our gifts and sharing make a real difference.
So, with very humble hearts, No Baby Blisters and Jesus Daily ask you to make a monthly, tax-deductible donation for all EB babies suffering, and in the memory of thousands of EB babies who have already died. Baby John’s resiliency and little smile brings joy to everyone in the room despite his constant pain and suffering. Let us stand together with him with prayers and financial support. Please know that every dollar amount helps and that Baby John’s parents are very grateful to each and every one of you that choose to be with us on this long, painful journey to survive and find a cure. We thank you all for being part of this and will continue to post updates.
May your Christmas, holidays and New Year be filled with good times, laughter, and memories made. Don’t take one moment for granted! For anyone facing this Christmas and holiday season with a disease, or the loss of a loved one, please know that you are in our prayers.
P.S. Make a bigger difference after donating:
1. Leave a prayer for Baby John and his parents
2. Click Share to invite Friends3. Start your own fundraiser for Baby John in less than 1 minute. Go to “Fundraisers” in the app menu and click “Raise Money” then choose “No Baby Blisters” from the Nonprofit search menu then invite your Friends
IN SUMMARY, with each passing day, our hearts at Jesus Daily long more and more for a cure for precious Baby John. We're here to ask you to please help save this baby's life today and find a cure. When you donate to our fundraiser, No Baby Blisters (a non-profit fighting EB with Jesus Daily’s help) will use the funds to help this baby with ointments and bandages, and the 500,000 children who also suffer from EB by funding research for a cure. Thank you to anybody that donates and shares this post! We can reach more people when we also tag Friends and click to invite friends. No child, mother, and father should have to go through this 😔
Understanding EB Information from Dr. Aaron Tabor, MD:
To understand partially the suffering of severe EB, imagine having the worst sunburn or thermal burn of your life that never heals and the pain and blistering never ends. EB is a genetic blistering skin disease that causes a baby’s skin to blister and peels off creating extreme pain and death in its most severe forms. EB is caused by numerous gene mutations that create a very weak bond between the baby’s skin layers. Friction, pressure, and heat on the skin causing 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 or funding it needs to be cured.
Baby John continues to wax and wane in his progress. He may not live for long if his new blister wounds can’t be adequately managed. His parents are very optimistic despite incredibly dark circumstances and truly grateful for any help we can provide. We are all so proud of how hard his parents are working to provide the best care for him. They have good days, but bad days are always lurking with skin blisters, severe pain, infection, and possible death. Their hope is that with our funding, we can create a cure. The first day Baby John takes a step and speaks a word will be a great victory for the family! It’s truly amazing to watch this baby successfully continue to fight for his life when he was supposed to die soon after this medical emergency began. While he survived the first year, which is the most dangerous time for babies with severe EB, he has a long way to go. His road to survival and the family’s road through this nightmare remains so hard and unpredictable. Patients with severe EB have super high death rates from skin cancer if they do not die from wound infections. The constant wound inflammation is believed to play a major role in cancer forming. In addition, EB survivors are often bullied because of years of scarring and treated poorly by people who don’t understand EB is genetic and not a contagious skin disease.
Helping Baby John has changed us emotionally and spiritually. Jesus Daily’s staff has shed many tears seeing his pictures and videos. We wish we could show you the full extent of Baby John’s blistering and wounds, but social media won’t allow it because it is too shocking. As typical of EB families, Baby John and his family are missing out on precious moments and memories of family life because of their constant struggle against EB. They don’t enjoy normal fun times with their childlike other families. They are not building sweet memories of the joy of a first child. Baby John can’t run and play like other children. Even tightly hugging him could increase his blisters and pain. It is something they surely miss, but maybe we can help them regain missing memories in the near future with a cure.
Baby John’s father has been working as hard as he can with 16-hour days to fund his child’s medical care. As much as it pains him to admit it, he really needs more of our help. Their family’s journey is a long one and will continue to require extensive and expensive medical care. Bankruptcy is often the outcome of the financial stress caused by EB. We want to help them keep their son, family and home intact, safe and together. Baby John’s parents are exhausted and need some relief. There are so many costs involved that if we step up to help, we can save their son, family, and home. The expenses from their nightmare are hard to calculate but just keep mounting.
We can either feel powerless because we don’t have funding to do the research, or we can all choose to give something to help. God gives us many challenges, but when I look at Baby John’s face, I know he came to us for a reason. His parents would work as much as needed if possible in order to earn enough funds for a cure, but unfortunately, there is a clock ticking and each day that passes, their son is more likely to die from infection and continue to develop scarring that can never be reversed.
Please help us make Baby John’s EB story known by sharing, tagging, inviting your family, friends, and the world. Every dollar gets us closer to saving his life and finding a cure for every EB patient.
God bless you for donating and sharing love.
PLEASE DONATE MONTHLY BECAUSE YOU CAN FUND SO MUCH RESEARCH FASTER SO BABY JOHN AND 500,000 OTHERS CAN BE CURED!
Godspeed to our mission,
Aaron Tabor, MD
Founder, Jesus Daily, and No Baby Blisters