You have supported precious children in China over the last several years. You should be justifiably proud of:
- funding the hospital stay and ongoing care of little WZX, who was born with spina bifida and hydrocephalus
- providing monthly care for ZZT following surgery for hydrocephalus
- supporting JH following tethered cord surgery
- donating to give monthly care to DXX (now Charlet, who has found a forever family in the U.S.), who was born with spina bifida and hydrocephalus
- contributing to monthly care for WXR, who had surgery for spina bifida and serial castings for club foot.
These children will carry your love and care with them in their healthier, stronger bodies for the rest of their lives.
As we're sure you realize, a liaison and communications link is a vital part of getting these children the surgeries and follow-up care they need. At this time, that link is no longer in place; we are closing out this project with the fervent hope that we will re-establish a liaison. When we do, we know that you, our partners, will join our effort again.
Surprises are so much fun!
Little did we know that the silken red thread of destiny would surprise our team by re-connecting us with a beautiful little girl that we had supported during her foster care in China. Little DXX—who isn't so little anymore—is now settled in with a loving family in the United States who affectionately calls her Charlet.
What's more? Charlet is sister to Laila, the little one that we recently helped get a micro-wheelchair (see our last report!) Coincidence? We think not! It's just that red thread doing it's business in our lives.
Here's an update on Charlet from her mom, Joslynn. We couldn't be happier that she is with this amazing family and growing up quickly.
Since bringing her home in December of 2013, we have watched Charlet blossom into a happy-go-lucky, spunky little girl. Charlet has been through many “base-line” tests to mark her medical status and the doctors have been amazed at her health and mobility as a child who suffers from spina bifida. When we tell the doctors of her spine and shunt placement surgery at one month old, they are speechless to explain how she could have survived, as most doctors in the U.S. do these two surgeries separately and at an age much more than one month. There are many things medically that “should” be wrong with Charlet, but they just simply don’t exist. She attends physical therapy once a week to strengthen her body and to help her walk. When we brought her home at 2 years old, she could “cruise” but not walk and she could not stand for long periods. Charlet also recently received braces for her legs to help straighten her gait and keep her joints safe from improper movement. She is now walking independently and her strength and endurance are improving everyday.
Our greatest efforts for Charlet have been emotional. Charlet was abandoned at one day old, and though she was in a very loving group foster home, she has simply never experienced bonding with a mother and an unchanging family. She quickly accepted Jason as her big Papa Bear. She loves to cuddle with him and be carried around everywhere. You don’t realize when you adopt the things you will have to “teach” this child that simply come as a natural part of development when you are raising your biological children. We had to teach Charlet how to enjoy and not fear play, especially outdoors. Grass and swings were things of great torment in her early months, but it is such a sweet sound to hear her adorable belly laugh now as she swings. When indoors, and if left to her own devices, for many months she would simply sit and stare at us as we moved around a room, with no idea how to “play” by herself. She required our engagement, and even then, she often didn’t know how to interact. Charlet actually really enjoys her solitary time now and I love watching her sing and play with her dolls peacefully with no fear or painful stares in my direction.
Charlet loves her big sister, Laila (3.5), and her really big brother, Steven (14). Laila and Charlet were adopted on the same day and they bonded quickly. They easily fall into their respective big sister/little sister roles. Charlet is a wonderful helper to her immobile big sister, often bringing her toys or helping her get things that are too heavy. Charlet and Laila are the predictably ornery little sisters who love to bug their big brother. But there is nothing more beautiful than seeing all three of my children cuddling on the couch or playing together on the floor. Charlet’s addition to our family has been an amazing blessing. Her early transition has been quite difficult for our whole family, but she is finally settling in, trusting the family she has been given, and knowing that we are hers forever!Thank you for your support of sisters Charlet and Laila!
Over the past weeks, The Red Thread team has gotten an unexpected crash course in Spinal Muscular Atrophy (SMA), due to a precious Chinese girl named Laila. The silken red thread of destiny recently connected us to this feisty 3-year-old and her American forever family and we’d like to share that story with you.
MisdiagnosisWhen Joslynn and Jason began fostering 18-month-old Laila in China, they were told she had cerebral palsy. Only three short months ago, after returning to the States, they found themselves faced with a new diagnosis for Laila: SMA, the second most common fatal genetic disorder in young children.
Children with SMA have problems with movement of any kind to varying degrees, even breathing and swallowing. SMA is an inherited disease that damages motor neurons in the brain and prevents important messages telling muscles “how” to move from reaching the muscles. When the muscles don't get direction on how to move, they become inactive, get smaller, and begin to waste away (a condition known as atrophy).
This degenerative disease limits the ability to complete simple tasks of life, like combing their hair. To date there is no cure, but many kids learn to live as independently as possible with therapy and treatment for the disease’s most troubling symptoms (kidshealth.org).
Moving forwardAs soon as her parents knew her true condition, they began researching the disease and looking for support. Joslynn attended her first Families of Spinal Muscular Atrophy Conference in Washington D.C. to learn everything she could to help their young daughter. During the conference, Joslynn’s eyes were opened to a real need for Laila: a micro-wheelchair.
A mother’s perspectiveFrom Joslynn: “When I called my husband, frantic and emotional, begging him to agree to put an unplanned $4000 purchase on our credit card—to buy our daughter a micro-sized, 6-pound wheelchair—he asked me to consider it for 24 hours before making a decision. I don’t fault my husband at all for his rationality because we both knew it was an out-of-reach purchase for us. However, it wasn’t until my time at a Families of Spinal Muscular Atrophy Conference that I truly understood the worth of this tiny wheelchair and what it would mean for our daughter.
During the conference, I was overwhelmed with sadness at Laila’s lack of independence. Even though we were in a place where almost EVERY child was physically immobile, they were all “running around”, playing, squealing, and chasing each other with the aid of their wheelchairs. Meanwhile my daughter sat motionless and bored, waiting for me to push her.
Until that point, my husband and I had been satisfied to carry Laila from room-to-room inside our home and push her in a stroller in public. Together we decided that nurturing our daughter’s independence was critical to her development. We took a leap of faith and bought the wheelchair, not knowing how we would pay the balance.
It only took a single day at home in her chair for my husband to join in my exhilaration over Laila’s newfound freedom. Her little face always beams with a smile while she’s in her chair. She loves to come into the room where I am and say, “Hi Mom.” And I say, “Hi Baby.” And then she says, “Laila go find Daddy,” and she wheels away. Only moments later she has usually circled around again, “Hi Mom!” We have set up little stations around our living areas where she can “play kitchen” or roll under her own little table to color or do stickers. She also loves to chase the cat or bump the front of her wheelchair into her big brother’s door in the morning to knock and say, “Wake up!”
Our greatest surprise was how the addition of a wheelchair impacted the rest of the family. As a mother, I found myself relieved of many requests from my immobile girl: “Mom, I fell over; Mom, I want to see you; Mom, where’s the cat.” I didn’t realize how many times I moved Laila around and fulfilled her requests until then. And then there are the benefits to our youngest child, Charlet. Because of Laila’s condition she had to be carried everywhere, leaving Charlet constantly jealous when I made her walk while carrying her “big” sister. Now that Laila is able to move around by herself, Charlet is also more willing to be independent and walk. Big brother is so proud to push Laila in her chair and loves to play chase with her. And Daddy can now safely take Laila outside to the garage so she can “help Daddy do work,” which she absolutely loves.
There are no words to express the gratitude we feel to The Red Thread Promise. Little did we know that we were already connected to them—they had sponsored Charlet in her foster home in China for TWO years prior to her coming home to us! And now, they have connected with our family again through sweet Laila. By paying the balance of the cost for Laila’s manual chair, my family is free to enjoy the perfect blessing of independence and mobility for our precious girl.”
Helping LailaWe are so thankful for that red thread of destiny connecting us to this beautiful family not once, but TWICE. And YOU are the reason we were able to bring much needed mobility to little Laila. It is through your tax-deductible gifts to our programs that we help children with disabilities lead the fullest lives possible. Please consider giving today and, as always, thank you for your continued support.
Every day that we hear from our partners in China with an update on one of the children we sponsor is a GREAT day! Our hearts swell when we see these children growing and thriving in the hands of the caregivers at Swallow’s Nest. We are thankful to be able to provide life-changing surgeries, life-sustaining hospitalizations and medical care for these babies until they are matched with a loving family forever.
As you can tell from his smile, WZX is a happy boy. He loves to eat, which is no surprise based on his chubby, kissable cheeks. He enjoys holding and playing with toys but occasionally gets upset and cries for no obvious reason, sometimes during meals or at night. Then, after a minute or so and some comfort from his caregivers, he’s fine again.
Although he’s over 2 years old, WZX has never spoken yet he responds to speech and sound, especially music. He often seems unaware of what’s going on around him and doesn’t process sounds very well.
Following his clubfoot casting, he appears to have no feeling in his legs. Due to his weight and lack of feeling, it is challenging to get him to move around very much. We are unsure as of yet, but he may require a wheelchair. His caregivers are working to provide him more exercises that will help him build strength in his arms and upper body.
Your support of WZX has been amazing and we are so thankful for your donations on his behalf. We will continue to provide medical care for him as he grows and pray for him to become a permanent part of a family soon.
Pneumonia is a serious threat to the children we support. This treatable infectious disease is one of the leading causes of death in China: it is the number one cause in rural areas; in urban areas, fourth. Data suggests that there are approximately 2.5 million documented cases of pneumonia in China annually. Of those cases, 125,000 (5%) people die of pneumonia-related illness.
Most disturbing to us is this: childhood pneumonia accounts for an estimated 17% of all child deaths in China. The Red Thread Promise takes pneumonia seriously, especially when it involves infants and toddlers who have other medical conditions that may compromise their immune system further and do not have anyone to advocate for them.
In January 2013, we introduced you to Baby WZX. He came to Swallows Nest (our partner foster home in China) unable to sit or stand due to club feet. After extensive evaluation, doctors decided to treat him with a non-surgical method that involves serial manipulation and casting, taping, physical therapy, splinting, and continuous passive motion.
One year later, WZX has made great progress in his club foot regimen. But this isn't his biggest hurdle. He was recently diagnosed with pneumonia and hospitalized. Thankfully, he is on the mend and back at Swallows Nest, on the road to recovery. Your donations helped provide his care at the hospital and we are so thankful for your support of this critical intervention.
Unfortunately, the little girl in the photo next to him is now in the hospital for the same reason: pneumonia. She has been there for over three weeks. With your contributions to this project, we can help her and others as well.
As always, thank you for everything you are able to give.
Data on occurances of pneumonia in China is from US National Library of Medicine National Institutes of Health.
Project Reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.
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Combined with other sources of funding, this project raised enough money to fund the outlined activities and is no longer accepting donations.
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