JACOB'S FUND :: Talking at Last!

While most children utter their first word when they’re around a year old, Christopher’s first words came when he was eleven: "horse, trot fast". Not your typical first words, but his mother, Felicia, was ecstatic to hear them!

Felicia, Christopher, and his brother, ready for therapy

Christopher’s severely autistic. He’s thirteen now, and he has been dealing with his diagnosis since he was a toddler.

His symptoms became apparent before his third birthday, and Felicia immediately began searching for help for him. Fortunately, she found Babies Can’t Wait, a Georgia Department of Health program for infants up to three years old with special needs. Thus began their journey on the road that is so familiar to thousands of families: the constant search for help for a child.

For families like Christopher’s, life assumes a new rhythm with the diagnosis: therapy several times each week, frequent and multiple doctors’ appointments.

While therapy may look simple to a typically developing person, it is hard work for children. Kids with disabilities often spend hours each week making their bodies develop new skills, skills that do not come naturally to them. For many children, therapy is temporary. Within a few months, or perhaps a couple of years, the problem is resolved and the child is back on track developmentally. For kids like Christopher, therapy becomes part of life and continues for many years, on into adulthood.

Hippotherapy requires riding backward too

Thankfully, resources and services for young special needs kids can be quite good. However, just like many other parents in this same situation, Felicia found out that as her son grew older, those resources dwindle dramatically. She found herself as a single mom dealing with two boys, facing the challenges of a special needs child and footing devastating medical expenses on her own.

After eight years of clinical therapy, Christopher’s doctor decided to take a new approach, and prescribed hippotherapy for this budding teenager. Felicia found McKenna Farms and Christopher began equine therapy.

And he began to talk.

What a milestone for a family whose child has never spoken a word! Their world changed in an instant. Now, when Christopher wants to go out, he can say “shoes.” If he needs a shower, he says “wash-wash.” When it’s time to go the bathroom, he can tell his mom “flush toilet.”

After two successful years of hippotherapy, Christopher has graduated to therapeutic riding, which will help him maintain and improve flexibility, balance, and muscle strength. In order to maintain continuous progress, consistent weekly therapy is vital. Felicia is able to pay for one therapeutic riding session a month. Jacob’s Fund underwrites the other three sessions each month to ensure uninterrupted therapy for Christopher, to maximize his potential.

Christopher and his brother with Stephanie, his therapist

Christopher’s speech triumph and the amazing and sometimes unexpected accomplishments of kids like him are what drive Jacob’s Fund‘s efforts. Your support makes it possible. We simply could not do this without you. 

Thank you.

HAITI :: Birthday Greetings

"Not-so-little-anymore" Christopher!

One of the many highlights of our work is receiving updates on the children we have supported over the years. Last week Christopher's forever family shared a video of him saying a prayer. This week TRTP President, Kathy, received a personalized birthday greeting from him. 

What a wonderful surprise when she opened her Facebook account to see his smiling face wishing her well. While it wasn't really her birthday (a Facebook date of birth glitch), Kathy stated "I would have a birthday every month if it meant getting something this special. Thank you, Christopher. You made my day!"

HAITI :: A prayer for 2013

Remember Christopher, the angel that graced so many of our blog posts during his time in Haiti and the US? Here is our 4-year-old little man offering a prayer in "Crenglish" (his own unique blend of Creole and English). You might just catch: "Jesus, thank you, food, iTouch, TV, love, amen" but your guess is as good as ours. He is still the apple of our eye and we are so thankful to share this peek of him with his forever family in the dawn of a new year. Happy 2013 to all of the children we have worked with, our donors and volunteers. We look forward to your continued support in the coming months as we expand our work in China, Haiti and the US.

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.”

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!)

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

Kathy & Tom - Days 1 & 2 in Haiti

Kathy, Tom and the team made it safely to Haiti despite late flights from New Orleans and Miami. They were greeted by Willem (MTM), Rachoul (Rivers of Hope orphanage director) and Jean Michelle (Rachoul's son) who took them to the guest house in the midst of a slow drizzle.

Haiti is in its second week of the rainy season, which normally lasts for approximately 6 weeks. The roads are taking a beating in all of the rain. Large potholes are now huge potholes. Vast areas of road has washed away leaving behind deep ruts that are difficult to traverse even in a truck. Large rocks and boulders have been washed into the streets making many impassible. Tomorrow the team will go to Port au Prince to see the affect the rain is having on the tent cities.

There are 7 people on the team, pictured from left to right:

• Sally, representing the Episcopal Diocese of Olympia
• Kathy, TRTP President
• Randa, interior architect
• Noor, urban planner
• Tom, interior architect
• Jennifer, former TRTP board member working for SDG Adoption
• Angie, occupational therapist

Kindergardeners singing at the Gramothe School

A tour of MTM's school and church followed. Willem showed them the site for the new Children's Home orphanage on MTM's property. Then a trip up the mountain on foot to visit the village of Gramothe and surrounding areas.

Sally holding Rose at Rivers of Hope

Christopher

Finally, they drove to Rivers of Hope to tour the facility and, of course, play with the beautiful children in Rachoul's care. There are 6 boys and 1 girl at this time. Praise God Christopher was feeling well today and running around like a typical healthy boy.

Tomorrow's schedule will be just as full. Check back for an update.

ORPHAN UPDATE - Christopher

We are so grateful to all of you who have reached out to us to see how you can help the children of Rivers of Hope orphanage following the earthquake. Your support in prayers, email and donations has been astounding. It is amazing to see how a tragedy can really bring people together and bring out our own compassionate spirits. The silken red thread of destiny is indeed visible again.

At this time, we are particularly concerned about Christopher, the adorable two-year-old with sickle-cell disease. Previously, when Christopher would suffer a sickle-cell attack, the orphanage staff would take him to the hospital for emergency treatments. For obvious reasons, this isn't an option right now.

In late December / early January, we were working out the details with Tulane Hospital to bring Christopher to meet with sickle-cell specialists in New Orleans. The specialists have graciously agreed to access Christopher and prepare a more sustainable and preventative treatment plan, addressing his ongoing medical needs. In the midst of the planning process, the earthquake hit. If Christopher's treatment plan in his native country was difficult to accomplish prior to the earthquake, it is much more complex now, causing The Red Thread Promise to accelerate our plans to bring him to the United States.

In order to bring him to New Orleans, Rachoul, Rivers of Hope director, is working tirelessly to get Christopher a visa so we can expedite his trip. Thankfully she managed to secure his passport on January 29, 2010. Stateside, our mountain of paperwork is moving along as quickly as possible. One of the many things we have to do is prove to the Haitian government that we have been in contact with and worked with Christopher prior to the quake.

Please check in for more details in the coming weeks. In the meantime, if you want to make a real difference in the life of one needy Haitian orphan, please consider donating to help cover Christopher's expenses. Tulane has put together an incredibly generous package for his treatment, but we still need your help to cover travel and other expenses.

Meeting Evenson

(Author's note: My apologies that several days have passed since we have posted. We are playing catch up with hundreds of email regarding The Red Thread Promise, some of them going back to early January and the wrap up of our first week of teaching English in Haiti. Of course, as soon as the earthquake hit, information about the conditions in Haiti took priority over the ESL posts and all of the other great work TRTP is doing. While our focus is still on earthquake relief, we wanted to share some final thoughts on our first week teaching English as well as some information about Jacob's Fund. That being said, some of these posts are not in chronological order for which I apologize in advance.)

While Kathy was in Haiti the week prior to the earthquake, she had the opportunity to meet Evenson in person, the adorable little boy that we are raising surgical funds for in Haiti. He is a student at Mountain Top Ministries (MTM) school so she was able to meet him during one of her trips there to teach.

Evenson is a lively 9-year-old boy who lives with his family. At birth, it was noted that he had an unusual appendage growing from his chest (shown in the bottom photo). Until now, limited access to health care resources made it unclear whether surgical removal of the mass could be easily done in his home country or if he would need to travel to the U.S. for treatment.

Through the efforts and partnership of The Red Thread Promise and Mountain Top Ministries, Evenson recently had xrays and CT scans performed that shows there is no significant internal organ involvement. He will be able to have surgery to remove the mass. The only thing that prevents Evenson from receiving his long-awaited medical treatment is the cost of the procedure, estimated at $3,000.

Kathy had the privilege of giving Evenson and his family a basket full of food (oatmeal, cookies, milk, black beans, rice, fish, peanut butter, fortified salt, Itala spaghetti, etc.) from The Red Thread Promise. We wanted him to know that we hadn't forgotten our promise to provide him with this surgery and were working toward that goal. (Little did we know how meaningful that basket would become for his family with the impending earthquake just days away.)

We are excited to share that an energetic team of med students and residents at Tulane and University hospitals in New Orleans have teamed to raise the funds necessary for Evenson's surgery. They are an ambitious group and have also volunteered to raise funds for Christopher's travel and other necessities when he comes to the US for evaluation of his sickle cell anemia. We are blessed to have such a great group dedicated to helping these two boys. This help is even more critical since the earthquake has made medical care in Haiti difficult to say the least.

If you would like to assist The Red Thread Promise in our treatment of Evenson or Christopher, please consider giving a tax-deductible donation via the PayPal link on the right or sending a check to our New Orleans office.

If you are associated with either Tulane or University hospital and would like to help, please contact TRTP board member, Jennifer Avegno at 504.301.5058.

ORPHAN PROFILE - Christopher

Hopefully you all met Christopher in our recent mailing. For those of you who haven't, he is an adorable 2-year-old living at Rivers of Hope orphanage in Gramothe, Haiti. Gramothe is a rural town in the mountains about one hour outside of Haiti's capital, Port Au Prince.

Christopher was brought to Rivers of Hope in 2008 as a very malnourished infant in need of medical attention. He has sickle-cell anemia and is frequently hospitalized due to his condition.

Not being a doctor myself, I had to look up what sickle-cell anemia was. According to Access Excellence, it is an inherited, potentially lethal disease in which a defect in hemoglobin, the oxygen-carrying pigment in the blood, causes distortion (sickling) and loss of red blood cells, producing damage to organs throughout the body. To me, that says he is one sick little boy who needs as much support as possible. And that's where The Red Thread Promise comes in.

We have pledged our support to care for Christopher over the next two years by underwriting his medical bills while his is in Haiti waiting for his forever family. Why two years? Because that is the average waiting time to place a child with an adoptive family. It is our hope by the end of that period he will have a new family who will continue his care.

If you or someone you know is interested in adopting this precious little boy please, contact Jennifer Mesick at SDG Adoption and Child Advocacy Center: 630.969.8202 or JenM@redthreadpromise.org.

If you would like to be added to our mailing list, please contact kathy@redthreadpromise.org.