Sunday, August 3, 2014

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!

Thursday, June 26, 2014

HAITI :: Christina's first miraculous steps

Christina after 2 successful surgeries
(photo courtesy of West Tennessee Haiti Partnership)
Remember beautiful Christina from St. Vincent’s? She is one of the many children we have connected with in Haiti over the years. Her story is nothing short of miraculous and, by supporting The Red Thread’s work in Haiti, YOU have been an integral part of her success. 


During a Red Thread outing in 2012
An otherwise completely healthy infant, Christina was born with a birth defect that caused severe clubbing in both of her feet. Over the years she endured multiple unsuccessful surgeries and castings to correct her condition, after which she was no closer to walking than she was the day she was born.

In 2013, the tides began to change for Christina. No longer would she be resigned to life in a wheelchair, but rather to a newfound hope of planting both feet on the ground (something her condition never allowed her to do) and even walking independently!
Following her first successful surgery
Through our partnership with West Tennessee Haiti Partnership (WTHP), Dr. Bheki Khumalo (clubfoot specialist / Memphis, TN) and Dr. Georges Beauvoir (surgeon / Port-au-Prince, Haiti), Christina's first successful surgery was completed in August 2013. The skilled surgical team performed a tendon release, bone and soft tissue correction, and finally a foot rotation on her right.

After her foot healed, Christina's second surgery was completed in February 2014 on her left. When the stitches were removed, she was able to wear a boot and worked with a physical therapist to strengthen her legs.


Gazing at two corrected feet
(photo courtesy West Tennessee Haiti Partnership)
In April came Christina’s miracle! Our partners from WTHP were conducting a clinic at Christina’s home, St. Vincent’s Center for Handicapped Children in Port-au-Prince. Dr. Jenn and Tiffany (visiting physical therapist and nurse respectively) began stretching Christina's legs and ankles, encouraging her to begin putting weight on her feet. Then it was time for Christina to stand up. With support of each arm, Christina put one foot in front of the other and took THE FIRST STEPS OF HER LIFE!

After 16 years of thinking walking was something unachievable, she was able to take her first steps and one of our partners from WTHP was able to capture it on video! The footage is raw but heartwarming. You can see the tender care given to her by Dr. Jenn when she gently wipes her face right before she walks.



Christina is a bright, energetic girl who is well on her way to leading a more normal life now that both feet are corrected. She will continue to work with therapists to walk and become increasingly independent.

Christina may never have taken these steps without your support for which we are eternally grateful. Your donations made it possible to rent a sterile surgical suite, purchase medications, schedule after-care and physical therapy, and cover all associated expenses for this beautiful young lady's care. We are forever grateful for Dr. Bheki, Dr. Beauvoir and Dr. Jenn for their countless hours working with her. 

We invite you to continue to be a part of this life-transforming process, helping kids like Christina, kids whose biggest obstacle in life was being born into poverty where adequate medical care isn't an option as their families struggle to put food on the table.


The cost of both surgeries - $3600!
The long-term effects - priceless.

There are many more success stories like Christina’s shared on our Facebook, website and this blog. Our team is available via phone or email to answer any questions you may have about how we serve impoverished children with disabilities. We invite you to join us in making a difference in these children’s lives. Financial support can be sent via our website or PayPal link at left or by check. Thank you for caring.

Sunday, June 8, 2014

JACOB'S FUND :: McKenna Farms Mission Experience, Late Spring 2014 part 1

TRTP volunteer, Rhonda, greeting one of the therapy horses

(left to right: Bernie, Rhonda, Wilma, Christian, Judy, Sonya, Glenna, Jim)
We’ve come back to McKenna Farms for another amazing mission experience. Back to visit the children and families we support, back to the gentle horses who lend their bodies willingly and gracefully, encouraging the children on top with their easy, repetitive movements, stimulating the small bodies to copy the sweet, free motion. Back to the quiet experts, the staff and therapists who make McKenna Farms a special, loving place for these children.  


Landon, his therapist and the horse-handler at the entrance 
to the Jacob Beachy Sensory Trail
This time we’re working along the Jacob Beachy Sensory Trail (the trail), built in honor and memory of our own Jacob, for whom Jacob’s Fund is named. Nestled in the woodlands surrounding the farm, the trail leads through forest and along a stream, circling back to the sensory stations. Each year, sun and rain weather and wear the stations along the trail, and this winter’s polar vortex has taken its toll.




As we plan our work, we observe Landon on horseback placing colorful beanbag frogs into the openings of the shape sorter, stuffing a frog in a cutout of a red circle, matching the color and shape called out by his therapist. For him, this is fun. The sensory stations appeal to his senses of touch, vision, hearing, and smell with fuzzy and smooth-leaved plants; colorful flowers, plants, shapes and tubes; large melodic chimes; and fragrant herbs. 




However, the affect of the activity reaches much deeper than fun – it is serious developmental science. Children like Landon who experience developmental delays often have difficulty processing sensory input, our basic interactions with the world. These are the building blocks of all activity, allowing them to negotiate the world in which they live. The sensory stations play a critical role in occupational therapy.




We are so happy to work on this trail. It is so meaningful to us and to all of the young people who use it daily as part of their therapy.

And now the work begins.


McKenna Farm's new barn entrance

Thursday, June 5, 2014

THANK YOU :: Columbus Montessori


A big shout out to long-time supporters from Columbus Montessori Education Center in Columbus, Ohio. The Upper Elementary class, kids in grades 4-6, conduct various activities and fundraisers throughout the school year to pay for their end-of-year trips. The group always designates a charity to receive 20% of their earnings. For the 4th consecutive year, that charity is The Red Thread Promise!

                                 

Alumni parent and TRTP VP, Sonya, was on hand this week during the school's graduation celebration to receive the check from a representative of the Upper Elementary class. We are deeply appreciative of the efforts of these young people in supporting other kids. Thank you for your continued support and best wishes to all of the graduates!
                               


Thursday, May 22, 2014

JACOB'S FUND :: Prayers for Fabiola

In loving memory

Sweet, sweet Princess. It is with heavy hearts that we share that she passed away early this morning. 

Yesterday morning, she came through her open heart surgery fine. By afternoon, the medical team was already discussing plans for her next procedure in 6 months following her expected recovery. Yet sometime during the night she slipped away. 

Tomorrow TRTP VP, Sonya, her children, and a friend will be visiting Princess's mother, Fabiola, to comfort her in any way possible. Sonya is printing out the photos she took of her two days ago and framing them to give as a gift - a small something for Fabiola to take home. We cherish the photos and hope that the family does as well. 

If you pray, please say a prayer for the family who is in deep mourning. If you think positive thoughts, please send your energy to them. The mother, father and grandmother's separation from one another must be unbearable. 

Gifts in her memory are gratefully accepted. Please write "Princess" on the memo line. To make a gift via credit card, visit our websiteTo make a gift via mail, please make checks payable to The Red Thread Promise:

The Red Thread Promise
249 N Belfield Ave
Havertown, PA 19083
Attn: Kathy Korge Albergate

Thank you as always for your support for all parents that grieve the loss of a child.

Wednesday, May 21, 2014

JACOB'S FUND :: An overwhelming day

Princess and Jacob Noah Beachy
Our hearts are OVERWHELMED today. It is a day for CELEBRATION, MEMORIES, TEARS, and most importantly, HOPE. 

Today we honor the life of Jacob Noah Beachy, namesake for Jacob's Fund, the US arm of The Red Thread Promise. Today would be his 10th birthday, a day we celebrate every year. Jacob was born with a heart condition that required multiple surgeries; complications from his final procedure took him from us 3 years later. While his life with us was brief, his memory continues to make a lasting impact on children with disabilities. We honor him every time we award a hippotherapy ridership to a disadvantaged child. Along with his family, we are happy that a bit of Jacob lives on in every child who receives this life-changing treatment.

On this same day 7 years later , an infant girl with a similar heart condition went to Nationwide Children's Hospital in Columbus, Ohio for open heart surgery. Today, tiny Princess, a Haitian infant just 6 months old and barely 10 lbs, had her first of several critical operations, under the skilled hands of the same surgeon in the same hospital where Jacob was treated. Both children will forever hold a special place in our hearts.

We ask for your prayers and positive thoughts for this little girl, her mother, the surgeon and the hospital staff. Although she made it through surgery, we are unsure of her status as of this post. We trust that everything went well, and following all procedures, she will grow up to lead the most normal life possible in Haiti with her family. The Red Thread Promise will continue to support Princess and her mother, Fabiola, while in the States as well as in their home country.

Your donations make a huge difference in the lives of disabled children in the United States and abroad. Please consider making your next gift to The Red Thread Promise in honor of Jacob to help children like Princess receive the medical care and therapy they need to lead the fullest life possible. Thank you for your support and for sharing this critical need with others so we can make a huge impact on children with disabilities.

To make a gift via credit card, visit our website.

To make a gift via mail, please make checks payable to The Red Thread Promise:

The Red Thread Promise
249 N Belfield Ave
Havertown, PA 19083
Attn: Kathy Korge Albergate

Tuesday, May 6, 2014

JACOB'S FUND :: Hilltop workday re-scheduled

Jacob's Fund Director, Glenna, and Amayzzing at Hilltop Equestrian Center
With a number of commitments pressing on Hilltop, plus the prediction for rain on Saturday, Hilltop has decided to postpone their work day for May 10th. We will let you know as soon as we have the new date! Thank you to all who have shown interest in joining us. We look forward to working with you at a later date!