Monday, March 26, 2012

Temporary mailing address

The Red Thread Promise has a new (temporary) mailing address while Kathy is in New Jersey caring for a family member. All of our mail is forwarding to the address below for the time being. Both the email and phone number remain the same.

The Red Thread Promise
20 Brookfield Avenue

Glen Rock, NJ 07452

Thank you for your understanding!

Friday, March 16, 2012

HAITI :: Turning complaints into compassion

Kimmie and some of the items she collected
Recently, The Red Thread Promise met an amazing fourth grader from the midwest. She had an incredible gift to share with us that we, in turn, would like to share with you.

Kimmie is a 9-year-old girl growing up in the suburbs of Ohio. Like others her age, one night she found herself complaining to her parents about all of the things she didn't have. (Haven't we all heard this at one time or another?)

In an effort to enlighten her eldest child about what it means to have nothing, her mother began sharing some of her experiences as an inner city social worker. She told her of a family who had five children. Both parents were unemployed and all utilities had been cut off. As a result, the family was running an extension cord to the neighbor's house in order to operate a small heater to keep them warm. Kimmie was also told of another family whose home was so deplorable that they had actual holes in the kitchen floor. However, both families still managed to be thankful for the four walls and a roof that they had over their heads.

These stories were a far cry from the life that Kimmie was accustomed to. These children didn't have American Girl dolls, MP3 players or bicycles. Yet they were satisfied with what little they had. 

Kimmie wasn't merely moved by these accounts - she was ENERGIZED. 

She told her mother that she wanted to do something to help others. When asked who, she simply stated "the people of Haiti" as if it was the most obvious choice in the world. More than two years had passed since the devastating earthquake which begged the question, "Why Haiti?" Kimmie's answer was right on point: "When a tragedy happens, so many people want to help right away but most people forget about others as time passes." (We couldn't have said it better ourselves.)

Thus, her service project was born, entitled Every Day is Giving Day. With the help of friends and family, Kimmie spread the word that she was collecting everyday items for people in Haiti. She created and passed out flyers, set up collection points and even did the morning announcements at her school to spread the word. In just two months, she collected over 1300 items! From wash cloths to soaps to toothbrushes and underwear, her diligence paid off.

Her next challenge was figuring out how to get the items to the people she wanted to serve. And guess who she found? Kimmie and her family were able to visit with Red Thread Vice President, Sonya, where she was able to see photos and hear stories about the people who would actually receive her gifts.

Knowing that the donations will be used and appreciated by the children of St. Vincent's makes us all smile.

Even greater still is knowing that compassion is alive in our children, a true blessing to The Red Thread Promise.

Wednesday, March 14, 2012

HAITI :: Disabled vs. Handicapped

Miele and Kelly

Caucasian vs. White, African American vs. Black, Hispanic vs. Latina, Disabled vs. Handicapped; semantics are at the root of this discussion and it is the ‘powers that be’ who decide the vernacular for the masses. In the United States there exists handicap parking as well as the American Disability Act. These words are interchangeable in conversation, however I believe them to mean two very different things.  

While attending the first Camp Jake for disabled children, I brought to the table that I [personally] do not like the word disabled. I am a 37-year-old below knee amputee who holds a full time job, travels the world, creates art, dances, kayaks, gardens, spends time with family and friends and considers herself an able-bodied woman, not disabled. I know I am handicapped because I need my prosthetic to help me walk. If I do not have the prosthetic on, I need the aid of my wheelchair, walker or crutches, each of which entitle me to the label of ‘handicapped’.  

Synonyms for handicap are hinder, impede, or incapacitate. This is true for those that need a device to help them function in daily life. Synonyms for disability are debilitate, disqualify, and ruin. These words, in my opinion, tend to hold a person down more mentally than their needs might hold them down physically. While certain words overlap, and meanings can ebb and flow, personally it boils down to dis = not + ability means Not Able To (insert activity here).  

Not all those who have extra physical challenges agree with my belief, which is why I know this was a personal disclaimer that I made at camp. I have had this discussion with an AKA (above knee amputee) and she prefers the word disabled. I have seen people who are considered ‘disabled’ be ignored or thought of as less than human. 

While working for Camp Jake, I was approached numerous times by Haitians on vacation that said thank you for what you are doing. One man in particular stands out in my head. This man was having breakfast before attending a wedding on the beach. He now lives in the States but is from Haiti. He looked at me over his omelet and said “Thank you, I know what my people do to those you are helping.”

If you see someone in a wheel chair, don’t think they need help being pushed. They are not thinking you need help moving your legs. If you see someone who is different than you, don’t stare, ask questions, strike up a conversation. We are more alike than we are different. The one label we all share is human.  

Always remember, "An invisible red thread connects those destined to meet, regardless of time, place, or circumstances. The thread may stretch or tangle, but never break." - Ancient Chinese Proverb

~ Kelly Andrews 2012

Monday, March 12, 2012

Who Dat Doctor!

Dr. Kanter, Christopher and Kathy

We’ll tell you who dat doctor – it’s Dr. Julie Kanter from Tulane Hospital for Children and the Sickle Cell Center of Southern Louisiana. She delivered the best news today that we could have hoped for:  based on extensive blood work and tests performed in New Orleans, Christopher does not have sickle cell disease! 

One happy father and son!

However, Tulane has determined that he does have sickle cell trait, which is common to 1 in 10 people of African descent across the globe.

So, after the jumping for joy and dancing concluded, we asked Dr. Kanter a few key questions:
  • How did this misdiagnosis happen? 
  • What does this mean to Christopher in the future? 
  • How can we ensure that another child isn’t misdiagnosed?
How did this misdiagnosis happen? Dr. Kanter suspects that a single test was done by the Haitian doctors to form their opinion. She explained that this particular test is by far the least expensive and that it will indeed pick up any trace of sickle cell. However, Dr. Kanter explained that the test does not distinguish between sickle cell disease and sickle cell trait, a critical distinction. Unless the hospital did further testing, the doctors incorrectly concluded that he has the disease. We are unsure if this additional testing is available in Haiti. However, the news is still positive for others suspected of having this painful disease—blood can be drawn on the child in question and brought to the US to complete the test and get conclusive results. 

What does this mean to Christopher? It means he WON’T have to be on penicillin and folic acid for the rest of his life. He won’t have to undergo yearly testing to detect his propensity for strokes. He won’t have painful episodes that often lead to hospitalization and blood transfusions. Since he does have sickle cell trait, it DOES mean there is a 25% chance that he will pass along the trait or the disease to his children. It also means the he should have his spouse tested. If she has the disease or the trait, it drastically increases their chance of having a child with sickle cell. Christopher will see a sickle cell specialist in his teens for further testing and counseling in these matters. 

What does it mean to other children? When children receive a positive diagnosis for sickle cell, adoptive parents, caregivers and orphanage directors can request additional tests to confirm the diagnosis, avoiding unnecessary, costly and intrusive medical intervention.

 The Tulane team

We want to thank everyone—in Haiti, the US, Saudi Arabia and Canada—for their support of this child. Everyone played a critical part in Christopher’s life—from thoughts and prayers to financial support to medical treatment. Now he is in the loving arms of his forever family and to them we say, “Take care of our boy that we have loved for the past 3 years. He will be in our hearts forever.”

Sunday, March 11, 2012

A romp through New Orleans

Following Christopher's first appointment at the hospital, we took the family on a quick tour of  New Orleans. Beginning in the famous French Quarter, we headed toward Cafe Du Monde for a little NOLA tradition: fresh beignets and hot chocolate. 

 Cocoa and beignets

Although tentative at first, it didn't take long for Christopher and his sister to begin lapping up the clumps of powdered sugar heaped on top of the sweet treats. After a rousing rendition of happy birthday for his sister, we set off on foot to do some sight-seeing. 

 Kathy (TRTP President), big sister, Christopher and Mom taking in the sights

 Dreams of Mardi Gras

Nothing escaped our view: the river, barges, stunning architecture, horse-drawn carriages, street performers, artists, shops and everything in between. We piled back into our cars and explored Metarie, the Bywater, the Lower 9th Ward with it's modern "Brad Pitt" homes and then headed back into Lakeview to see some of the huge above ground cemeteries. We ended the tour inside St. Paul's Episcopal Church, looking at the plaque far above our heads indicating the waterline from Hurricane Katrina.

 Hugs with TRTP supporter, Cathleen

Christopher, Mom and TRTP Vice President, Sonya

That evening we met up with some Red Thread supporters to introduce Christopher and his family. It was a BUSY but productive day. We are fairly certain that we wore Christopher out and ourselves as well.

Saying goodbye (for now!)

Saturday, March 10, 2012

HAITI :: Crash course in sickle cell disease

On Thursday, The Red Thread converged on Tulane Hospital for Children and the Sickle Cell Center of Southern Louisiana. After navigating a half dozen or so elevators (how many elevators does one building need?!) we finally found the pediatric unit and there he was, Christopher, on US soil! It was a beautiful moment that we had waited so long for—in his mother's arms, watching classic cartoons in the waiting room. 

Playing while we wait for the doctor

We were quickly ushered into an exam room and met by very friendly social workers and Dr. Kanter. She explained everything that would happen that afternoon: blood tests, pathology, a "sickle cell 101" session, etc. We discussed Christopher's current health and reviewed what we knew of his care and treatment in Haiti. 

One of the social workers drawing a diagram of how 
sickle cell trait and disease are passed from parent to child

In just a few hours, the sickle cell specialists demonstrated their broad scope of knowledge about the condition and shared much great information: 
  • the disease evolved from Africa 
  • although very prevalent, is does not exclusively affect people of African descent
  • 1 in every 4 African Americans has sickle cell trait or disease
  • both parents have to be carriers for it to be passed on to a child
  • each person has their own symptoms / complications that are unique to them
  • long-term effects of the disease on a person's health (excessive pain, organ problems, strokes)
  • how to know when a child needs to see a doctor (fever and other indicators)
  • life-long maintenance medications (penicillin, folic acid, etc)
  • annual testing to detect strokes
  • bone marrow transplants and requirements
While we all asked questions, Christopher had blood drawn and received a physical exam. Although a bit tearful, he re-emerged riding a tricycle and was quickly back to his previous rambunctious self!

Following our appointment, Dr. Kanter would review his labs and determine the kind of sickle cell he has, make referrals for specialists closer to the family's home, and develop a long-term treatment plan. after thanking the Tulane team for their time and expertise, we set up his appointment for Friday and took the family on a little New Orleans excursion.

Enjoying time on Mom's lap during the consultation

Tuesday, March 6, 2012

HAITI :: Christopher in the news!

At 4:00 CST today, WDSU-6 in New Orleans ran a story about our very own Christopher and the care he is going to receive at Tulane. Check it out!

Saturday, March 3, 2012

Camp Jake memories preserved

We hope you enjoy the book we created showcasing the first Camp Jake. Please help us spread the word about this exciting program by sharing it with your family and friends. 

We are currently accepting applications from people interested in serving as a volunteer for the July 2012 session. 

As always, your generous contributions to Camp Jake and other Red Thread programs help change lives in Haiti, China and the US. If you are interested in donating toward Camp Jake, please see the PayPal option on the right as well as our mailing address. All donations are tax deductible to the full extent of the law. Thank you!

Start your own Shutterfly Photo Book today.

Friday, March 2, 2012

Haitian Orphan to Receive Free Sickle Cell Anemia Care At Tulane Hospital for Children

NEW ORLEANS – The Red Thread Promise has partnered with Tulane Hospital for Children and the Sickle Cell Center of Southern Louisiana (SCCSL) at Tulane to provide free medical care for a 4-year-old Haitian orphan. Christopher was diagnosed with sickle cell anemia as an infant in his home country of Haiti, the poorest nation in the Western Hemisphere. He is expected to arrive in New Orleans on March 9 to begin treatment at Tulane.

Young Christopher has lived most of his life in an orphanage in rural Haiti. His condition requires that he take daily medication and make frequent trips for medical care, putting a great toll on the child. The devastation from the 2010 earthquake in Haiti made it more difficult for Christopher to receive the medical treatment he so desperately needs.

“We have been supporting Christopher’s medical care for the majority of his short life, providing for his treatment while in the orphanage,” states Sonya Yencer, Vice President of The Red Thread Promise. “Now that he is in the States with his adoptive family, we are thrilled to continue serving this child with the generous help and support of Tulane Hospital for Children and SCCSL. We couldn’t ask for a better partnership.”

Christopher will soon travel to the New Orleans for a more comprehensive evaluation and medical care at Tulane Hospital for Children and the Sickle Cell Center of Southern Louisiana. Sickle cell anemia affects millions throughout the world. It is an inherited disorder found more commonly among people whose ancestors come from sub-Saharan Africa, South America, Cuba or Central America. New Orleans has a large population of sickle cell patients and some of the most advanced treatments are available at the Sickle Cell Center of Southern Louisiana, which is good news for Christopher.

Sickle cell anemia causes red blood cells, which are usually smooth and donut-shaped, to become stiff and assume a sickle shape. The sickled red cells can have difficulty traveling through small vessels and begin to stack up and cause blockages that deprive tissue and organs of oxygen-carrying blood. These blockages bring about episodes of severe pain and can ultimately damage tissue and vital organs. Currently, the only cure available for sickle cell disease is a bone marrow transplant; however the disease can be managed through proper medical treatment.

“While at Tulane, Christopher will undergo diagnostic testing to determine the level of disease severity,” said Dr. Julie Kanter, Assistant Professor of Pediatric Hematology-Oncology at Tulane, and the primary physician who will oversee Christopher’s medical care. “This will include blood tests, a cardiac exam and neurological testing. Tulane doctors will then recommend a treatment regimen for Christopher based upon the results of his medical tests.”

The Red Thread Promise will continue supporting Christopher throughout his stay in New Orleans and in the coming months so that he can continue to receive the medical care he needs.