Meet Ping!

Ping is a very special one-year-old little boy who has overcome a lot of obstacles in his short life and captured many hearts along the way. Ping has a rare congenital skin condition called epidermolysis bullosa. Additionally, he had a heart defect. Ping transferred to the Dew Drops Little Flower home in Beijing when he was three weeks old. When he was 5 months old, he had open heart surgery to correct a VSD and ASD (read story here). He has recovered extraordinarily well from surgery over the last several months. Ping’s skin remains a challenge especially as he becomes more and more active.

It is not anticipated that Ping will need any further surgeries. He is a little behind his typical peers developmentally, but considering his medical conditions, he is doing well. He has good head control, he can roll both directions and can sit with support. He can pivot and scoot around the floor and reach for and play with toys. Ping is interactive with his caregivers, smiles, babbles, follows simple verbal instructions, claps and waves.

This brave boy has a patience and perseverance that most people take years to acquire, if they ever do at all. Ping’s ever ready sweet smile even in the face of this difficult skin condition is an inspiration and example to everyone he comes into contact with. In his time with us he has charmed everyone he meets with his soulful eyes. 

It is very urgent that Ping finds a forever family as soon as possible. Ping has a complete adoption file. Ping’s only hope is to be adopted. And soon! He needs a loving family that can see past his medical issues to the sweet, loving little boy who needs what every child deserves; a family to call his own. If you or anyone you know would consider making Ping a part of your family and would like additional information on this incredible little guy, please put your agency in contact at adoption@littleflowerprojects.org

Our 1 in 20,000 Butterfly Baby

This week is National EB Week (October 25 to 31). “EB” stands for Epidermolysis Bullosa, a group of genetic conditions that result in easy blistering of the skin. EB may be classified into 3 types depending on how the condition manifests: EB simplex, junctional EB and dystrophic EB. Patients with EB simplex show the least symptoms. Sometimes, they may not develop symptoms until they start to crawl or walk. Junctional EB (formerly known as lethal junctional EB) is the most severe out of the 3 types, and patients with junctional EB have a low survival rate. EB affects 1 out of every 20,000 people. As medical technology develops, EB patients have a better survival rate and quality of life. Children with EB are often referred to as “butterfly children”, not because they look like butterflies, but because their skin is fragile like butterfly wings.

 

                             

From the moment they are born, these children suffer from skin damage, blisters, adhesion of their fingers or toes, having their nails fall off, shrinking of their joints, skin infections etc. In serious cases, skin damage or peeling may even occur while the fetus is still in the mother’s womb, resulting in partial loss of skin on the children’s limbs after birth. Children who are fortunate enough to survive face lifelong struggles with skin that is easily blistered and damaged, and have to implement strict skincare routines. There has been some successful treatment of the condition via bone marrow transplantation, but due to the expensive cost of such treatment, there are not many precedents and the effective treatment of EB is still a way off.

Some may think, why prolong the suffering of such children? It’s not an unusual thought, but life is priceless, full of surprises and unquantifiable – who are we to put a price on a child’s life and decide that such a child’s life is not worth living? Looking at the face of this smiling child, our doubts and fears are erased. We choose to give him a future.

This little guy with a sunny disposition and a smile up to his ears is a 1 in 20,000 butterfly baby. Although his skin develops new blisters every day, his warm smile never leaves his face. Here is his story. Shortly after the Spring Festival in February this year, this little guy with a 1 in 20,000 EB condition came to Dew Drops seeking help for his heart defect. Prior to his case, there has never been a successful precedent of such a young baby with EB undergoing open heart surgery here in China. Unwilling to give up despite the crushing odds against him, Dew Drops asked for and received generous help from all around the world for the little guy, and good news ensued. After more than 5 months of preparation and effort, this special butterfly baby entered the operating room in July this year and received a record-breaking heart surgery. The little guy beat all odds to recover day by day with the blessings and hope of everyone, starting a new life journey full of hope and strength!

In conjunction with the International EB Week, little Ping Ping, a 1 in 20,000 butterfly baby with a congenital heart defect, hereby represents all EB patients to thank all of you who have helped to care for and raise awareness of EB. May the richness of life be experienced by these precious butterfly children!

Our Butterfly Baby

There is a group of children referred to as “butterfly children”. It’s not because they look like a butterfly, instead, it is because their skin is as delicate and fragile as butterfly wings. What exactly does this mean?

This group of children are born with a rare genetic disorder characterized by the development of blisters following minimal pressure to the skin. The medical term for this group of skin diseases is epidermolysis bullosa (EB). Blistering can happen when a child is simply held or handled. There is no cure for this inherited disorder but treatment focuses on prevention and treatment of wounds.

On top of this challenging condition, what if a child also is born with a heart defect? We know such a boy and today we would like to share his story. His name is Ping.

In 2018, right after Chinese New Year, Dew Drops received a phone call from an orphanage. They had a little boy who had some kind of skin problem and they needed help taking care of him. After 10 long hours of travel, we were able to bring this sweet boy to Beijing for further medical consultations. The doctors confirmed our suspicion that he had EB and also diagnosed him with a congenital heart defect (VSD). When we went and picked up Ping, we were ready to take care of him. We were ready to treat his wounds, hold him carefully and love him a lot. But now, an unexpected challenge had risen. How can a boy with EB have heart surgery? How can he recover from surgery with ventilators, post-operative monitoring systems and IV’s attached to him? But if we didn’t provide him with this surgery, his heart would continue to decline and eventually would stop…..

We had only one obvious answer to this complicated situation – we had to find a way to provide Ping with life-saving heart surgery while taking care of his skin. And so the preparation started. We started collecting special supplies to be used during the surgery and post-operative care. We also contacted a team of doctors who are experienced in providing care to children with EB and heart defects. And we focused on Ping’s growth so he would get bigger and stronger for surgery.




After 5 months of preparation, the day has finally come. We are headed to the hospital with a suitcase full of supplies, a team of medical doctors and nurses ready to tackle this surgery and concerned supporters all around the world sending this sweet boy many best wishes! Today, we are tackling this challenging situation head on and giving Ping a chance to live.

In Loving Memory- Lei and Ping

Baby Lei passed away earlier this week after fighting a bad respiratory infection. On Thursday, Baby Ping also went to join Jesus, a particularly tough passing because she had held on for so long. We will miss both of them. Rest in peace, little ones.

Loyal readers may notice that we've recently had a higher number of babies pass away lately. As winter starts and little ones are abandoned in the cold, our window for saving them gets much smaller. The babies are also more vulnerable to sickness during this time, so it's a difficult time overall. Having more babies pass away is especially hard for those working closely with them. As we continue to save as many lives as we are able, please keep our workers in your thoughts and prayers when these little ones don't make it.

Baby Ping

Baby Ping weighed in at 1.75 kilograms the day after she arrived at our baby home in April but appeared otherwise healthy. She went through a cycle of becoming sick then getting better before getting sick again. She arrived with the tiniest eyes, looking small even for such a tiny frame. The baby home director, Raphaela, laughingly remembers joking about Ping being an alien because her head was so oddly shaped. Ping's ankle also had an abnormal dip in it, as if something was missing, and her right hand had a slight deformity with the thumb. Overall, though, she was mostly battling the general difficulty of being born prematurely. Until about four months of age, she even slept curled up in a tiny ball, as if she was still in her mother's womb.

On August 6th, she died--no heartbeat or discernible oxygen level--before suddenly breathing in 10 minutes later. At that point, Raphaela redoubled her efforts to stabilize Ping. Miraculously, Ping's eyes were again filled with life, a moment Raphaela will not soon forget.

Since then, Ping has gained weight, though she still has an oxygen tube (which she tries to pull out often enough that it must be gently taped to her cheeks). She has difficulty feeding because she bites at the bottle nipple instead of sucking, though Raphaela has observed her sucking her thumb happily, indicating that she does at least have the ability. This difficulty has been cause for concern, though, and she was being feed via feeding tube until recently. We are hesitant to put her back on the feeding tube just yet as we hope she will still develop a normal feeding ability without it. We are hoping for a winter free from sickness, but she is currently fighting another bout. Join us in hoping and praying for a healthy next few months for Baby Ping!