HAITI :: A week of surgeries

Dr. Bheki performing an evaluation on a previous trip

Dr. Bheki and his team from West Tennessee Haiti Partnership arrived safely in Port-au-Prince yesterday. He and Dr. Beauvoir, a Haitian surgeon, will begin seeing children at St. Vincent's tomorrow morning, including little Wes (who you heard about earlier this week on FB) as well as Jonathan, another little boy that the silken red thread of destiny connected us to. 

Please keep Dr. Bheki in your thoughts and prayers as they provide love and care to many children throughout the week. 

So thankful for our wonderful partnerships! We can't do this work alone.

Having some fun mixing smelly scabies ointment!

CHINA :: 2-years-old and ready to take on the world with your help!

Meet our newest little friend from China! 

WXR is an adorable 2-year-old with a sweet personality - she's a charmer for sure with that smile! Thankfully, she has already received surgery for spina bifida and serial casting of her club foot and is doing well in the hands of our partners at Swallows Nest! Sadly, it appears that she may be incontinent as she came back from Shanghai with a horrible irritated bottom. The Red Thread has sent funding for her medicine as well as her follow up care. 

Please help us support WXR by making a donation in her honor to our China program (click on the PayPal button - donations are accepted via PayPal but you don't need a PayPal account). We hope and pray that she finds her forever home quickly. 

Who wouldn't want to hug on this baby for years and years?

CHINA :: A micro-wheelchair for Laila

3-year-old Laila, all smiles!

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.

Misdiagnosis
When 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 forward
As 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 open to a real need for Laila: a micro-wheelchair.

A mother’s perspective
From 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!”

Big brother, Laila, and little sister, Charlet

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 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 Laila
We 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 via PayPal or check made out to The Red Thread Promise, 249 N Belfield Ave, Havertown, PA 19083. 

Thank you everyone!