Comes Healing
Anemia Together
What is KJ's Hope Foundation?
DONATE
Resources
We provide resources to educate the general population about sickle cell anemia, while working to ensure those living with the disease have access to the information needed to effectively manage it.
Partnerships
We partner with our local blood and bone marrow banks to find ways to encourage more people to donate.
Support
We form helpful support groups for parents of children with sickle cell anemia as well as support groups for adults living with the disease.
Prayer
We have a dedicated team of prayer warriors that takes prayer requests and intercedes continuously on your behalf.
Financial Assistance
When possible, we provide temporary financial support to those who need help purchasing medicine or accessing healthcare to manage their sickle cell disease.
Volunteer
We bring love and hope to children’s hospitals and Ronald McDonald Houses, forming volunteer groups (Agents of Hope) that visit and provide entertainment through dramatic skits, arts and crafts, reading and more.
Resources
We provide resources to educate the general population about sickle cell anemia, while working to ensure those living with the disease have access to the information needed to effectively manage it.
Partnerships
We partner with our local blood and bone marrow banks to find ways to encourage more people to donate.
Support
We partner with our local blood and bone marrow banks to find ways to encourage more people to donate.
Prayer
We have a dedicated team of prayer warriors that takes prayer requests and intercedes continuously on your behalf.
Financial Assistance
When possible, we provide temporary financial support to those who need help purchasing medicine or accessing healthcare to manage their sickle cell disease.
Volunteer
We bring love and hope to children’s hospitals and Ronald McDonald Houses, forming volunteer groups (Agents of Hope) that visit and provide entertainment through dramatic skits, arts and crafts, reading and more.
What is Sickle Cell Anemia?
Sickle cell anemia is an inherited form of anemia – a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout the body.
Normally, healthy red blood cells are flexible and round, moving easily through the blood vessels. For those with sickle cell anemia, the red blood cells become rigid and sticky, shaped like sickles or crescent moons. These irregularly shaped cells can get stuck in small blood vessels, which can slow or block the flow of blood and oxygen to parts of the body.
What is the cause?
Sickle cell anemia is caused by a mutation in the gene that tells your body to make the red, iron-rich compound that gives blood its red color (hemoglobin). Hemoglobin allows red blood cells to carry oxygen from your lungs to all parts of your body. In sickle cell anemia, the abnormal hemoglobin causes red blood cells to become rigid and sticky.
The sickle cell gene is passed from generation to generation in a pattern of inheritance called autosomal recessive inheritance. This means that both the mother and the father must pass on the defective form of the gene for a child to be affected.
If only one parent passes the sickle cell gene to the child, that child will have the sickle cell trait. With one normal hemoglobin gene and one defective form of the gene, people with the sickle cell trait make both normal hemoglobin and sickle cell hemoglobin. Their blood might contain some sickle cells, but they generally don’t have symptoms. But they are carriers of the disease, which means they can pass the gene to their children.
Learn About
Symptoms
Signs and symptoms of sickle cell anemia, which vary from person to person and change over time, can include:
Sickle cells break apart easily and die, leaving you without enough red blood cells. Red blood cells usually live for about 120 days before they need to be replaced. But, sickle cells usually die in 10 to 20 days, leaving a shortage of red blood cells (anemia).
Without enough red blood cells, your body can’t get the oxygen it needs to feel energized, causing fatigue.
Periodic episodes of pain, called crises, are a major symptom of sickle cell anemia. Pain develops when sickle-shaped red blood cells block blood flow through tiny blood vessels to your chest, abdomen and joints. Pain can also occur in your bones.
The pain varies in intensity and can last for a few hours to a few weeks. Some people have only a few pain episodes. Others have a dozen or more crises a year. If a crisis is severe enough, you might need to be hospitalized.
Some adolescents and adults with sickle cell anemia also have chronic pain, which can result from bone and joint damage, ulcers and other causes.
The swelling is caused by sickle-shaped red blood cells blocking blood flow to the hands and feet.
Sickle cells can damage an organ that fights infection (spleen), leaving you more vulnerable to infections. Doctors commonly give infants and children with sickle cell anemia vaccinations and antibiotics to prevent potentially life-threatening infections, such as pneumonia.
Red blood cells provide your body with the oxygen and nutrients you need for growth. A shortage of healthy red blood cells can slow growth in infants and children and delay puberty in teenagers.
Tiny blood vessels that supply your eyes may become plugged with sickle cells. This can damage the retina — the portion of the eye that processes visual images, leading to vision problems.
Learn the
Complications
Sickle cell anemia can lead to a host of complications, including:
A stroke can occur if sickle cells block blood flow to an area of your brain. Signs of stroke include seizures, weakness or numbness of your arms and legs, sudden speech difficulties and loss of consciousness. If your baby or child has any of these signs and symptoms, seek medical treatment immediately. A stroke can be fatal.
Without enough red blood cells, your body can’t get the oxygen it needs to feel energized, causing fatigue.
This life-threatening complication causes chest pain, fever and difficulty breathing. Acute chest syndrome can be caused by a lung infection or by sickle cells blocking blood vessels in your lungs. It might require emergency medical treatment with antibiotics and other treatments.
People with sickle cell anemia can develop high blood pressure in their lungs (pulmonary hypertension). This complication usually affects adults rather than children. Shortness of breath and fatigue are common symptoms of this condition, which can be fatal.
Sickle cells that block blood flow through blood vessels immediately deprive the affected organ of blood and oxygen. In sickle cell anemia, blood is also chronically low on oxygen. Chronic deprivation of oxygen-rich blood can damage nerves and organs in your body, including your kidneys, liver and spleen. Organ damage can be fatal.
Sickle cells can block tiny blood vessels that supply your eyes. Over time, this can damage the portion of the eye that processes visual images (retina) and lead to blindness.
Sickle cell anemia can cause open sores, called ulcers, on your legs.
The breakdown of red blood cells produces a substance called bilirubin. A high level of bilirubin in your body can lead to gallstones.
Men with sickle cell anemia can have painful, long-lasting erections, a condition called priapism. As occurs in other parts of the body, sickle cells can block the blood vessels in the penis. This can damage the penis and lead to impotence.
Cure
The only cure for sickle cell disease is a bone marrow or stem cell transplant. Bone marrow is a soft, fatty tissue inside the center of the bones where blood cells are made. A bone marrow or stem cell transplant is a procedure that takes healthy cells that form blood from one person – the donor – and puts them into someone whose bone marrow is not working properly.
Bone marrow or stem cell transplants can be very risky, and can have serious side effects, including death. For the transplant to work, the bone marrow must be a close match. Usually, the best donor is a brother or sister. Bone marrow or stem cell transplants are often used only in cases of severe SCD for children who have minimal organ damage from the disease. Please discuss your options with your doctor.
Board of Directors
Tanya S.
James
PRESIDENT
Tanya S. James, PRESIDENT
Tanya S. James is the founder and CEO of the TJ Entertainment Group. She has a dual Bachelor of Arts degree in Print Journalism and Public Relations from North Carolina A&T State University and a Master’s Degree in Mass Communication from the University of Georgia. She is married and the mother of two kids, one of which was born with sickle cell disease and had a bone marrow transplant in 2015 to cure the disease. Tanya is very passionate about educating others about both sickle cell disease and the bone marrow transplant journey.
Paul S. Morton Jr. (PJ Morton), BOARD MEMBER
Grammy Award and Dove Award winner PJ Morton is a songwriter, producer and R&B artist. In addition to performing with pop powerhouse Maroon 5 and collaborating with the likes of Stevie Wonder, Solange, and Erykah Badu, he is the founder and CEO of Morton Records based in New Orleans, LA. PJ is married with three small kids and has several close friends living with sickle cell anemia.
Paul S.
Morton Jr.
(PJ Morton)
BOARD MEMBER
Marcia
Rogers
BOARD MEMBER
Marcia Rogers, BOARD MEMBER
Marcia Rogers is an Illinois native and graduate of Clark Atlanta University. She loves traveling and spending time with her family and friends. She has a huge heart and is passionate about helping others. She has been a nanny for over 15 years, and over those years she has worked with kids with different special needs, including sickle cell anemia. These experiences have catapulted her desire to learn more and be able to educate others about the disease.
Comekia Blake, SECRETARY
Comekia is an elementary school teacher in Dallas, Texas. She has been teaching since 2007 and currently teaches fourth grade. She has her Bachelor of Arts & Sciences Degree from Texas A&M University-Commerce and a Master of Education from Northcentral University. Comekia is currently working on her Doctorate of Education with Grand Canyon University. Comekia resides in Forney, Texas with her husband, three children, and nephew. Her youngest son has sickle cell disease.
Comekia
Blake
SECRETARY
Join The Team
If you are interested in becoming a volunteer (Agent of Hope), joining a support group or submitting a prayer request, please contact us.
- KJ's Hope Foundation
- 11035 Golf Links Drive #79016
- Charlotte NC 28277
- tanya@kjshope.org
KJ's Story
...the journey of
In September 2009, two weeks after Kyle was born, I received devastating news. The doctor called to let me know that the newborn screening tests revealed that Kyle was born with sickle cell anemia. I remember that afternoon very vividly.
As the doctor continued talking, I dropped down to the floor in tears. I had no idea what lie ahead on our journey, but I knew one thing for sure: I would need my faith in God like never before.
The following week, we had our first appointment with the hematologist at the Children’s Hospital of Atlanta. We were given a detailed overview of the things we may experience, including possible pain triggers, signs and symptoms of potential crisis and activities to avoid. They also started him on a penicillin regiment to help his little body fight against blood infections.
I went home equipped with all of this information, yet I felt extremely defeated and guilty about his diagnosis.
In the coming months, things went pretty smoothly. We attended regular appointments with the hematologist to monitor Kyle and thankfully, he had not experienced any pain –as far as we knew. Not yet.
Kyle wasn’t even one year old when the first known crisis happened. He couldn’t communicate about his pain, but after eliminating every single other option for the nonstop crying, it was clear what was happening. As a mother, it was one of the hardest nights of my life, knowing that my beautiful boy was in pain and there wasn’t anything tangible that I could do to relieve it.
When a child has sickle cell, normal childhood things – like getting a slight fever – are treated much differently. For them, a fever could indicate a dangerous blood infection, requiring an immediate ER visit. We spent more time in the ER than most parents can imagine.
Overall, Kyle didn’t experience many pain crises, but when they did come, it was absolutely heartbreaking. While these occurrences were not too frequent for him, he had other obstacles to overcome.
Sickle cell anemia also increases a child’s chances of having a stroke. For Kyle, tests showed that his chances were astronomically higher than they should be. To lessen his odds, he had to endure monthly blood transfusions. For many, once they start this treatment, it continues throughout adulthood.
I thought this was going to be Kyle’s story … then an interruption caused his next chapter to be rewritten.
Early 2014, one of my best friends, Consuella, connected me with Robert Mackey, the founder of the Lydia Smith Sickle Cell Foundation based out of Chicago, IL. We played phone tag for weeks before finally connecting. Never in a million years did I think that our initial conversation would forever change my world.
I thought we would simply discuss how I could get involved with his organization. Instead, he asked if I had gotten my daughter tested.
“Tested for what? Sickle cell? No, she doesn’t have it,” I replied.
He said, “No, test her to see if she is a bone marrow match for Kyle. He may be one of the few kids fortunate enough to be cured of his sickle cell disease – if she is a match.”
Now, I knew about bone marrow transplants, but was always told that they were reserved for children suffering tremendously from the disease. I had been told time and time again that Kyle didn’t qualify.
Of course, I had always been happy that we didn’t have too many major issues with his sickle cell, but I would still much rather have a permanent solution instead of “ongoing maintenance” to manage it.
At his next doctor’s appointment, when they began discussing yet another new “maintenance” regimen, I inquired about the bone marrow transplant. Prepared with information from Robert, it was abundantly clear that I would not be brushed off – though believe me, they tried.
After several months, we were finally granted a referral to get Kendall tested and she proved to be a PERFECT MATCH across the board. After several more months of medical appointments and extensive testing, including checking every single major organ of Kyle’s, we were finally approved to move forward.
On Sept 20, 2015, Kyle (then six years old) and I checked into the hospital to begin his pre-BMT process. This included surgery to place his central line and a few rounds of chemo to kill his current bone marrow. On September 30, 2015, I watched as my then 7-year-old daughter bravely entered the operating room at 5 AM to begin the process of extracting bone marrow from her back. Once they were done, we joined Kyle in his hospital room and witnessed a miracle through a simple IV as the bone marrow transferred.
And then we waited. We waited for weeks.
After about a month in the hospital, we moved to the local Ronald McDonald House. Once we left the hospital, I became Kyle’s nurse and doctor. Kyle was taking about ten medications, all given on varying schedules. Plus, he had to be reconnected to an IV port at night. I also had to clean his central line and change his bandages. Yes, I was officially Dr. Mom.
The first month, Kyle’s body struggled to maintain good platelet counts, so he had daily platelet transfusions. Eventually, the doctors made changes to his medication and everything stabilized. Due to all the infusions, Kyle experienced iron overload and later had to have regular phlebotomies until his iron was back to normal range.
On November 11, 2015, we received the news that we had been anxiously awaiting. The bloodwork results were in and Kyle was 100% SICKLE CELL FREE.
We returned home right before Christmas. Kyle was on visitor restriction and couldn’t go to any public places outside of his doctor’s appointments because of his immune suppressant medicine. Our outpatient appointments were daily at first, then gradually moved to three times a week and then once a week.
As we approached the 100-day post-transplant mark on January 8, 2016, we were able to breathe yet another sigh of relief because many of the potential complications would have happened during that time. So many people across the world celebrated with us by posting pictures and messages hash tagged with #kjshope100.
By his six-month post-transplant appointment (March 30, 2016), Kyle had been weaned off most of his medicine and had been cleared to start in-person school that fall. By month nine (June 30, 2016), he was allowed to say goodbye to his mask and all dietary restrictions had been lifted.
By the time we hit the one-year anniversary of his transplant, Kyle was enjoying life as a normal kid. He could go swimming without the cold water triggering a crisis. He could walk hours upon hours without pain creeping up his legs. He could get a fever and just take some Children’s Tylenol and sleep it off.
Our journey wasn’t easy by any means. In fact, many times it was absolutely terrifying. We are grateful for every person that prayed for us through our journey. It was those prayers that fueled our faith and our hope to stay the course.
Kyle is now 12 years old and absolutely thriving. He hasn’t experienced any setbacks from his transplant and has now lived as many years without sickle cell as he lived with it.
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