USA / CHINA :: A ramp for Laila

Laila at home

We love Laila Mei, a beautiful, feisty, four-year-old Chinese girl and her American forever family whose story we first shared with you last year when we funded the purchase of her first manual wheelchair! Leila Mei’s story of foster care, adoption, misdiagnosis followed by a heartbreaking diagnosis of Spinal Muscular Atrophy (SMA), a progressive genetic neuromuscular disease, had us on an emotional roller coaster.

What we came away with, though, was HOPE for the future as we continue to love and support this family, watching Laila grow and prosper. You, The Red Thread Promise community, made Leila’s much-needed wheelchair a reality.

The road to independence

Now, as winter yields to spring, an organization in Laila’s family’s community has committed to provide skills, tools, and manpower to build a ramp/deck on the back of the family house for Laila to go in and out independently in her power chair!

Building will begin on March 28, 2015.

The ramp will provide Laila the freedom to safely enter and exit her home, play in her backyard, and enjoy the independence every child needs. Leila’s family is responsible for paying the costs of materials - $1000.

Recently however, due to the extensive time for appointments and advocacy that is required for Laila's care, Mom was forced to choose between her job and income or the complex needs of her family. Without her secondary income, saving the funds for the ramp is out of reach.

We need you

And that is why we bring this need to you, our supporters. Your contribution to Leila’s wheelchair ramp will make a huge difference in Leila’s quality of life. Would you consider a tax-deductible donation to The Red Thread Promise and designate it for "Laila" to help build an accessible ramp for this special girl?

Donations can be made by check or PayPal.

Credit Card: Please go to our website and click on HELP, DONATE and the PAY PAL. You do not need a PayPal account to donate. Designate: Laila

Checks can be mailed to:

The Red Thread Promise

249 N Belfield Ave

Havertown, PA 19083

Designate: Laila

Thank you Red Thread Promise community for your continued support.

Additional info about Laila

A micro-wheelchair for Laila

Surprise, surprise, surprise!

Laila (lower right) and family

Ramp Update

We are so pleased to announce that Laila's ramp is FULLY FUNDED! Thank you to those who generously contributed to meet this little one's needs. The Red Thread Promise and Laila's family are thrilled with the love that is continually shown to their family. Look for photos soon of her new ramp!

CHINA :: Surprise, surprise, surprise!

Charlet!

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. 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.

Charlet (left) and Laila with their braces

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!

Charlet (left) and Laila

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!