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 :: 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!

HAITI :: Shifting the paradigm from immobility to mobility

TRTP President, Kathy, showing off one of our ATWs

Independence is a precious gift, especially to people with disabilities. 

Each time The Red Thread Promise gives an All Terrain Wheelchair (ATW) to an impoverished child, teen or adult in Haiti, we shift the paradigm from immobility toward mobility. Through these gifts—gifts that you have made possible—lives are being changed. 

In the US and other countries, many resources are available for people who can't walk:

• quality medical care and treatment
• insurance policies and governmental programs to offset costs 
• readily available manual wheelchairs
• wheelchair-accessible vehicles and public transportation
• facilities with wide doors, railings, ramps and elevators
• solid infrastructure with smooth streets and sidewalks 

These opportunities give a wheelchair-bound person the chance to actively engage in life, moving about in their homes, schools and communities.

The scenario is quite different for a person under the same circumstances in a developing country like Haiti:

• limited quality medical care is extremely costly with no subsidy 
• lack of infrastructure—dirt roads, sand, rocky surfaces—makes passage in a standard wheelchair nearly impossible
• wheelchairs that perform well on rough terrain are financially out of reach for most Haitians, often costing upwards of 6 years wages* 

But there is hope! 

We are committed to raising the funds for another full container of wheelchairs that will change more lives. Each shipment holds 100 - 120 ATWs plus maintenance parts. These durable wheelchairs are made from inexpensive bicycle parts that keep the cost low—$350 each—and simplify upkeep and maintenance. They are specifically designed to pass over Haiti's rough terrain, giving independence that most recipients have never experienced.

With your support, we will fill this container and continue giving the gift of mobility to those in need. Donations can be made through our website. Thank you!

*The gross national income per capita in Haiti is US$660. Source: World Bank 2010

ATW PROGRAM: Empowering People With Disabilities

Diana in her child-size wheelchair

Recently, we were approached by GOOD Magazine to be featured in their publication dedicated to mobility issues. The article below about our International Mobility Program—providing all terrain wheelchairs to people in need—just hit the internet today. We'd really appreciate it if you followed this link to our article on GOOD and clicked "IT'S GOOD" at the bottom of the page. Thanks, GOOD Magazine!


How Our All Terrain Wheelchairs Are Empowering People With Disabilities

Robert was an accomplished welder and farmer in Gramothe, Haiti before 2010. He is married and has two sons, one of which hopes to become an engineer. However, Robert has a progressive condition that is causing him to lose the ability to use his legs. He has been immobile for quite some time and the doctor has not given him a prognosis.

Robert

In Haiti, the streets are uneven and bumpy, rendering “hospital-style” wheelchairs virtually useless. In the mountains, where Robert and the majority of Haitians live, dirt roads and rocky footpaths are common. However, The Red Thread Promise makes it possible for people like Robert to become more independent by providing them with all terrain wheelchairs through our International Mobility Program (IMP). In fact, Robert is hopeful to return to welding since receiving his new wheelchair.

The Haitian mountains

Streets of Port-au-Prince

During our first trip to Haiti in 2009, we had no intention of starting IMP. But when we observed that hospital-style wheelchairs were not meeting the needs of those using them, it compelled us to seek out the best all terrain wheelchairs available. We worked directly with a manufacturer to keep costs low while providing quality chairs specifically designed and built to traverse rugged terrain. Our chairs feature strong frames, flexible suspension, and wide front wheels especially for sand, rock and uneven surfaces.

In June 2011, we delivered a full shipment of 100 wheelchairs to St. Vincent’s Center for Handicapped Children in Port-au-Prince. Our team worked directly with the center to identify candidates for distribution, assemble the chairs, and provide maintenance training to our Haitian partners. Now, The Red Thread Promise is working to bring mobility to 100 additional people in and around Port-au-Prince as well as local businesses and hotels that are not accessible.

Our all terrain wheelchairs at the distribution point

These gifts of mobility give people with disabilities (PWDs) more opportunities to fully engage in life. They promote better self and family care, and help recipients actively participate in educational and economic opportunities. Children can attend school with their peers, acquiring life skills that help them become independent adults. Teens and adults are better able to engage in meaningful work, providing financial stability to their families. Independence increases each individual’s sense of self-worth and self-respect in their home countries.

Yolene, all smiles

Ultimately, our goal is to bring communities together, where everyone is viewed with dignity. We not only provide wheelchairs for individuals in need, but also model respectful and inclusive behavior toward people with disabilities. The Red Thread Promise actively discusses discrimination issues with Haitian businesses, governmental entities and other NGOs working in Haiti, encouraging the implementation of anti-discrimination strategies in Haitian society since 2009. Fortunately, on March 13, 2012, the Haitian Senate passed the Law on the Integration of Disabled Persons, which was the first of its kind in the country.

In July 2013, we will be bringing 50 PWDs to a beach resort in Montrious, Haiti for summer camp. Our team has been working with hotel management to build wheelchair ramps and widen doorways for wheelchair access into all areas of the resort. Management has even requested several of our all terrain wheelchairs for use with future guests.

We will continue to work in Haiti and other countries providing mobility for years to come. However, in order to offer a long-term impact, especially to our current program in Haiti, we’d love your support. Help us empower PWDs by giving them the opportunity to be more mobile and independent.

HAITI :: 1/5th of the way there!

Beautiful Diana in her Red Thread wheelchair!

While it may be an unlikely name for a blog post, it couldn't be more true today. We are 1/5th of way to funding a full container of All Terrain Wheelchairs (ATWs) for Haiti and we couldn't be more thrilled! 

Yesterday we received a $7,000 grant from the Lukens Fund of The Columbus Foundation toward this project. We are so grateful for this amazing gift! When added to the funds already received for the wheelchairs, we now have over $10,000 designated specifically to Haiti.

A full container holds 100 - 120 ATWs (depending on the wheelchair sizes specified). This comes at a total price of $45,000—approximately $350 per chair—which, in the world of specialty wheelchairs, is extremely reasonable. Yet, as we have shown in previous blog posts, the chairs are durable and easy to maintain and repair. We continue to check up on the chairs with each trip to Haiti, bringing replacement parts as necessary to keep the chairs in good working condition for years.

It is your generosity that has helped us come this far and your continued support that will allow us to completely fund a full container—a container that will change the lives of many Haitians with disabilities, like Diana, one of our first wheelchair recipients. 



Please consider sharing this project with your co-workers, friends and family as we can make a difference together! As always, donations can be made via PayPal or check. All info is in the right sidebar.

ATW :: Nicaragua / Juan update

Juan on the day he received his new ATW

Remember Juan in Nicaragua? Juan received one of our All Terrain Wheelchairs (ATW) in late 2011. Lucy, our contact from Accion Esperanza / Partnership for Hope (Ashland, OR), recently visited Juan in his community of El Lagartillo and shared these brief updates:

• Work is underway to make the front entrance to Juan's house wheelchair accessible
• Juan received the replacement parts for his ATW (including new tubes and tools)
• He was pleased to note that the replacement tires for his ATW are a standard size bicycle tire that is locally available

"It is far superior to any chair I have ever been in. 

It is fast and stable and looks forward to using it daily."

~ Juan

We will continue to update you on Juan as information becomes available. Thank you to our donors for their prayers and financial support of our programs. Together we are indeed making a difference.

New Tubes for ATWs!

Over the past few months we have been actively working with St. Vincent's Center for Handicapped Children to finish distributing our supply of All Terrain Wheelchairs (ATWs). We are pleased to share that over 90% of the chairs have been distributed to people with disabilities in and around Port-au-Prince!


We continue to offer maintenance and repairs for those already in circulation and are constantly re-evaluating the wheelchairs for areas of improvement on the next shipment. Earlier in 2012, our team discovered that the original tubes shipped with the chairs did not fare well in the intense Haitian heat and began researching alternatives. 


After sending a variety of tubes to St. Vincent's to test in the climate, we identified ones that were more suitable to the extreme conditions. Orders were placed so that every wheelchair in circulation as well as those in storage would receive replacement tubes that would better hold air. Prior to shipment, each tube was tested by the manufacturer to ensure that there were no holes or defects. 

Tubes are held under water to look for bubbles indicating leaks

By your continued support, we can meet our goals for this project:

• to provide the best quality products to our partners instead of old or second-hand chairs often sent to Haiti
• to maximize the usefulness and longevity of the chairs by providing on-going maintenance
• to reduce our environmental impact on Haiti by keeping the chairs in use longer, thereby minimizing waste

We invite you to continue helping us support people with disabilities in Haiti. Donations can be made via PayPal (button on the right) or snail mail to the address on the top right.

Back in Haiti again

Flag Day celebration

Yesterday The Red Thread team embarked on our second trip of the year to visit and work with our friends in Haiti. Following a redeye flight for Kathy and Tom, the two met up in Miami and flew in to Port-au-Prince together. After settling into the hotel, a meeting and dinner, they went their separate ways to rest up and prepare for the busyness of today, when the real work began.

Tom and a St. Vincent's student

First on the agenda was visiting St. Vincent's where we found out that Tom is quite the kid-magnet! Students of all ages were coming out of the woodwork to greet and hug him, happily posing for pictures, especially those from Camp Jake. To our surprise the kids were preparing for Flag Day. Each had made his or her own Haitian flag and was proudly displaying it in the classrooms, around the grounds and during a ceremony in the courtyard which the team happily observed.

Then Kathy and Tom got down to work, meeting with Fr. Sadoni, Director of St. Vincent's, for a long meeting covering a multitude of topics including: 

• the rebuilding of the school
• creation of a much-needed computer lab
• setting up routine All Terrain Wheelchairs (ATWs) maintenance and repair
• computer accessibility in the pharmacy
• the release of the handicap-accessible van from customs
• the soon to be unveiled St. Vincent's logo (designed by TRTP's Vice President, Sonya) 
• the upcoming session of Camp Jake, the campers and the caregivers

MEETING HIGHLIGHTS

Computer Lab

Fr. Sadoni was very excited to hear that The Red Thread is working to secure 20 computers to be sent to St. Vincent's in order to set up a much-needed computer lab for students! To top it off, we were excited to learn that our main concern—that of consistent power to run the computers—has already been addressed. A new electrical breaker has been installed on the grounds that provides uninterrupted power in the classrooms and offices. A dedicated, secure space will be prepared to set up a fully functioning computer lab in the school. The Red Thread team will then travel to St. Vincent's to help set up the lab and do some of the initial training of lab workers and older students who will mentor the younger ones as they learn to use the computers. What a blessing!

All Terrain Wheelchairs (ATWs)

One of the things that makes The Red Thread stand out from the "drop it and run" relief organizations is our commitment to the people we serve and the supplies that we send. With each trip, we check on those using our wheelchairs as well as the chairs themselves, looking for signs of wear and tear, making sure they are in good working order, talking to the people using the chairs to provide input, always on the lookout for areas of improvement. 

 Kathy surrounded by workers from the prosthetics shop

 Inserting the new tubes

 Testing out the tire pumps

Making sure everything is in good order!

During our trip in January 2012, we noted that some of the tires weren't holding air as well as anticipated. After much research, Kathy secured alternate tubes as well as several different kinds of pumps for the St. Vincent's crew to try. Kathy and Tom worked hand-in-hand with the St. Vincent's team to change out many of the tubes with the new ones and tested all of the air pumps. Scheduled maintenance has been set up and will be done on the chairs every 2 weeks to ensure that they are always in top working order for their owners. After determining if these tubes hold air better than the originals, we will order new tubes for all of the wheelchairs.

Camp Jake

Tomorrow is the big day for Camp Jake. The team will scout 2 new locations to see if there is another facility with better accessibility for those in wheelchairs. They will also be spending time looking for Haitian markets where more of the camp supplies can be purchased in-country, instead of purchasing everything in the US and carrying it in. We are always looking for ways to save money without sacrificing quality.


As details were ironed out and plans discussed for all of these projects, that red thread of destiny was revealed again. Our team felt a spine-tingling connection to the administration, staff and students of St. Vincent's. We know we are in this for the long haul. We hope you are too. Join us during this journey of providing hope and healing to some of Haiti's most vulnerable children. Through your financial support and volunteerism we can and are making a difference in the lives of these kids.

Fr. Sadoni and Tom

First ATW to Nicaragua!

Yes, you read the title correctly. We have sent our first wheelchair to Nicaragua.

Juan, a librarian in El Lagartillo, Nicaragua

In the community of El Lagartillo, Achuapa, lives a 42 year old man named Juan, who spends his days in a wheelchair as a result of a congenital birth defect. He has overcome many challenges in his life. He lives in a rustic mountain community with no paved roads, a challenge even for those with two strong legs. The majority of transportation is by foot, horse, ox cart, bicycle and rural bus one half mile away. Community members share a single truck for special events and emergencies.

Old ...

... and new!

Juan sporting his new ATW

An attack by contras in 1984 killed six people in his village, including his uncle, cousin and two school friends. Juan survived the brutal onslaught hidden in a trench, and many others were able to escape thanks to the bravery of the villagers who stayed to defend the community.

Juan is a member of a local community association, Hijos del Maiz, and recently became a librarian in El Lagartillo. He is considered an oral historian of the community due to his remarkable ability to remember events and conversations with accuracy and great detail. He keeps up with international news and listens to daily radio broadcasts.

Test driving the chair in daily living spaces

The Red Thread Promise is proud to partner with a small non-profit—Acción Esperanza / Partnership for Hope (based in Ashland, Oregon)—to provide Juan with a hearty wheelchair that could navigate the rugged dirt roads and paths, replacing the mountain of hand-me-down wheelchairs that he has received in the past.

A single ATW was hand-carried from the states to Nicaragua by representatives from Partnership for Hope who have known and worked with Juan and his community for the past 25 years. We were thrilled to see the smile on his face and hope that this chair serves him well for years to come.

New All Terrain Wheelchair video

Remember those beautiful bright red All Terrain Wheelchairs that we delivered in June / July, 2011? We've put together a video that tells a bit of the story and shows some of the distribution.

For more details about the assembly and distribution of the chairs, check out:

Back in Haiti again (June 2011)

The gift of mobility (July 2011)

Please share this link with friends and family and let them know what The Red Thread Promise is doing in Haiti and other countries!

The angels in red

This post is from Sonya personally. She is the Vice President of The Red Thread Promise.

One of the highlights of my last day in Haiti was going upstairs in St. Vincent’s dormitory to visit Yolen, a teenager that I have felt a strong connection to ever since we first met back in February. She is a quadriplegic with no use of her legs and extremely limited use of one arm and hand.

Yolen

Yolen was lying in her bed when I entered the dormitory, but when she turned her head toward the door and saw me, her smile lit up the room. Each time we visit, I take the time to stroke her arms and her hair, to wipe lunch remnants off her face and talk to her, whether she can understand me or not. She recognized me instantly and kept reaching her tiny atrophied arm up to me so I could rub her arm as usual. We “talked” for awhile and then I had the honor of lifting her frail body out of the bed and into her new red wheelchair.

Her red dress reminded me of the day we presented Diana her chair back in February. She blended right in! It was such a blessing seeing Yolen in her new chair next to Diana. I look forward to seeing her again.

Diana

One of the sight-impaired boys examining Diana's wheel

The gift of mobility

It has been a long and challenging process getting this container of wheelchairs to Haiti. Months of fundraising, thousands upon thousands of dollars, countless emails refining details with the manufacturer, 45 days on the sea en route to Haiti, piles of paperwork and finally navigating the Haitian government’s “process” in port and customs. But it is so worth the effort.

The culminating event was no Hollywood production (as much as we would have liked one!). It was a small group of dirty, hot Americans and Haitians working together to distribute the new chairs to St. Vincent’s students, alumni and community members.

In our best effort to practice responsible wheelchair provision, all recipients were brought to the courtyard at the school. Unlike many organizations, we do not believe in a “one size fits all” philosophy.

Four different size wheelchairs were set up outside Fr. Sadoni’s office. The older children and young adults capable of making their own decisions were able to test drive multiple chairs to determine which one was the right fit and would best suit their individual needs. Ronald helped up select the proper size wheelchairs for the youngest children who were waiting for us in the dormitory.

Caravanning the empty wheelchairs from the storage space to St. Vincent's school

As soon as all sizes had been determined, the team set out to the storage area to gather the appropriate chairs. One of the recipients, Rony, followed us and waited patiently outside so he could be first. As soon as he selected the one he wanted, he hopped in and was spinning around in an instant, practically doing a dance with his new wheelchair! He immediately requested a pen so he could mark it with his name that he proudly wrote on the backrest. He even stayed to help Sonya affix the stickers to the chairs.

Rony trying out his new chair

Adding his John Hancock to the backrest

Proud and tall

Unlike the frantic rice and water distributions following last year’s earthquake, the process at St. Vincent’s was calm. All the chairs were set out in rows, delineated by size while recipients eyed the chair that they wanted.

One by one, each person climbed into his or her new seat, some independently while others required assistance. A few were tentative, moving gingerly and slowly, testing out the brakes and the maneuverability of the mountain bike tires that are so different than the smooth hospital wheels they are accustomed to. Others were quickly trying to figure out how they could do tricks, pop wheelies and fly around the courtyard!

Helping a student into her new wheelchair

Test drive!

While their reactions varied greatly, audible thank you’s in Kreyol, English, French and sign language abounded.

Much to our surprise, some of the older boys chose not to accept a new chair. The puzzled looks on our faces prompted Jean Robert to ask why. The young men said they couldn’t play basketball in them! One boy explained that the thick all terrain wheels (meant for traversing rough terrain) wouldn’t allow the fluid movement necessary for wheelchair basketball. While unexpected, we respected their decision and, of course, now we are researching sports wheelchairs to include in coming shipments.

Since school had ended at St. Vincent’s right after our departure earlier in June, many of the students were on summer break with their families and unavailable to receive their chairs that day. However, there are plenty for them all when school returns!

Spare wheelchair parts

We are happy to have provided these chairs to St. Vincent’s and look forward to returning on future visits to check how the chairs are serving the children. Because of your generous monetary donations we could also provide enough replacement parts and tools for months to come. Thank you again for your continued support of The Red Thread Promise.