Team Thor

Team Thor I'm a 13-year-old warrior fighting against Sickle Cell disease, and I need your help. To address this, I started chelation treatment to remove the excess iron.

I urgently need a 10/10 stem cell donor match, and I'm reaching out to all the amazing individuals who can make a life-saving difference. I am Thor, an intelligent and vibrant 13-year-old with big dreams of becoming an Electrical Engineer. Aside from my academic pursuits, I enjoy fishing, shooting on the range, golfing, and spending time with my friends. Being an honor roll student, I take my schoolwork seriously, although my attendance and performance can sometimes be affected by my frequent absences from school. I was born with Sickle Cell Anemia, an inherited blood disease that causes significant damage to my body over time. At just 8 months old, I had my first blood transfusion, which was a surreal experience for me and my family. It was hard to believe that at such a young age, I was receiving someone else's lifesaving blood. When I turned 2 years old, I experienced my first pain crisis, and it was a challenging time for my parents. They felt so helpless seeing me in pain, rubbing my arms, and expressing my discomfort. I would often cry out, saying, "Ouch, pain, momma, it hurts; please stop the pain." It was heartbreaking for my parents to witness, and all they could do was offer me comfort and wait for the pain medication to take effect. In 2014, my life took another unexpected turn when I underwent a routine Transcranial Doppler Scan (TCD). The results came back abnormal, indicating that I was at high risk of having a stroke at the age of 4. To prevent this, my treatment plan included monthly blood transfusions and hydroxyurea medication. A port was surgically placed in my tiny chest to make the bi-weekly blood transfusions more manageable. It took some time for me to adjust to this device, which was crucial to my monthly transfusions. As time went on, I underwent over 20 blood transfusions, which unfortunately led to iron overload in my body. After discussing my abnormal TCD scan with my doctor, we explored the possibility of a Bone Marrow Transplant as a potential cure for Sickle Cell Disease. In 2015, my family and I partnered with NMPD (formerly known as Be The Match) to find a suitable donor. Over the years, we encountered three potential lifesaving donors. The excitement and hope were overwhelming when a potential match joined the NMDP registry in 2017. However, our joy was short-lived as the donor decided not to proceed with the donation. In 2022, two more potential donors appeared on the registry, but unfortunately, they couldn't be located. To increase our chances of finding a match, we also sought assistance from Marrow Mates, an organization that supports families in their search for donors. Through their Extended Family Donor Search Initiative, we have received some leads, which has been quite exciting. In November 2023, I was admitted to the hospital due to a chronic pain crisis that affected my entire body. The pain in my left hip was especially severe, making it difficult for me to walk. During my hospitalization, an MRI revealed that I have stage one AVN (Avascular Necrosis). The race is on to find a match for a potential transplant. If my mobility worsens in the coming months, I may need to undergo Core Decompression surgery. Despite all the challenges I have faced and will continue to face, my attitude remains positive. I always tell myself it wasn't my time when potential donors fell through or obstacles arose. I maintain a level of maturity beyond my years. My family and I are incredibly grateful for the support we have received on our journey. The cost of a stem cell transplant is significant, and to help with the expenses, we have set up a GoFundMe account. We appreciate any donation, regardless of the size, as every contribution makes a difference. Additionally, we encourage others to share our story and urge family members and friends between 18 and 40 to join the registry. If you want to join the registry, simply text "Showup4thor" to 61474. By showing up for me, you are showing up for everyone. Remember, it only takes one person to say yes and potentially save a life. My story is a testament to my strength, determination, and the power of community support. Despite my challenges, I will continue to pursue my dreams and inspire those around me. Thank you for being a part of my journey. Text: ShowUp4Thor To 61474
https://my.bethematch.org

To update your contact information:
1 800-627-7692

https://gofund.me/7ef22e80

08/06/2025

Yesterday, Thor had a hands-on, real-life class in financial education. He’s been independently investing in stocks and crypto for years and handling bills over the phone. His practical test involved cashing checks, transferring funds between accounts, and obtaining a cashier's check. He not only paid our property tax bills but also learned about the foreclosure process. An insightful conversation with an older lady shed light on why many properties in black neighborhoods are sold by the county.

It's essential for us to teach our kids about financial responsibility.

Join our team today and consider registering with the NMDP to become a stem cell donor for those waiting for a match.

Text "Showup4Thor" to 61474.

259 days post bone-marrow transplant👏🏾

07/11/2025

Sickle Cell Awareness. Join the registry today to become a stem cell donor. the registry

Song by: Zach Smith

This morning, we had a smooth appointment at Duke Labs and a physical exam. Thor is now 229 days post bone marrow transp...
06/09/2025

This morning, we had a smooth appointment at Duke Labs and a physical exam. Thor is now 229 days post bone marrow transplant. This healing journey has truly been an eye-opener. We encountered another speed bump with his pericardial effusion, but Thor handled that challenge with incredible mental and physical strength. The journey may feel like a marathon, but being cured of Sickle Cell will be well worth it. Thank you all for your thoughts and prayers—let's continue to live life with purpose!

If you’re between the ages of 18 and 40, we encourage you to join the NMDP registry to become a match for patients in need of a bone marrow transplant. Many friends and colleagues are still searching. Imagine if it were you, a family member, or a friend in need—would you hesitate to join the registry? Don’t wait—take action today!

Text "Showup4thor To 61474 or visit the website at www.nmdp.org.

05/30/2025

Thor’s Pericardial Effusion Recap: 220 Days Post-Bone Marrow Transplant

I wanted to provide an update on Thor's journey. Last Thursday, he was admitted to Duke Hospital to have fluid drained from his heart, and they removed 300cc. The drain tube was left in place for monitoring.

On Friday, 45cc was drained, followed by 24cc on Saturday and 23cc on Sunday. We decided not to drain any fluid on Monday or Tuesday, allowing a 48-hour wait before checking again.

Yesterday, we were thrilled to drain 33cc after that wait, and they also removed the drain tube the same day! I am so proud of Thor and his bravery; he mentioned that the tube removal wasn't as bad as he expected. 🤷🏽‍♀️👀 He feels a couple of ounces lighter!

Today, we had another echogram, which showed minimal fluid. We were discharged and will remain in the local area for now. I treated Thor to his favorite stop, Wing Stop; he deserved every chicken tender. After a stressful eight days, we'll be resting at the Ronald McDonald House.

If you want to become a stem cell donor, please text "Showup4thor" to 61474.

God is so good to Thor; somebody say Amen.

Today was a good day for Thor! The fluid draw went smoother this time, and we’re pleased to report that the cardiologist...
05/24/2025

Today was a good day for Thor! The fluid draw went smoother this time, and we’re pleased to report that the cardiologist removed 23cc of fluid from his heart, which is a decrease from before. Tomorrow will be the fourth draw, and we're hopeful that there will be no fluid to remove. Our goal is to get it down to 15 cc or less, so please continue to keep Thor in your thoughts and prayers. He’s doing well and is eager to go home! We’ll be here until Thursday. Thank you all for your support and prayers!

Yesterday, after removing 300cc of fluid from Thor’s heart, he kept his drain tube in place to monitor any potential flu...
05/23/2025

Yesterday, after removing 300cc of fluid from Thor’s heart, he kept his drain tube in place to monitor any potential fluid buildup overnight. This afternoon, the cardiologist came by, and while we were hopeful, he drained an additional 40cc today. Tomorrow, we'll need to drain again, the goal is 15cc or less.

Please pray for no fluid tomorrow, as these procedures are painful for Thor. The discomfort stems from the pericardial sac returning to its natural position.

We're still trying to understand what caused this fluid buildup, which could be due to GVHD, infection, certain medical treatments, autoimmune disorders, and more.

This is just another speed bump in our journey. We trust in God's timing for complete healing.

If you'd like to help save a life text Showup4thor to 61474 to become a stem cell donor.

05/22/2025

Hey everyone! Just wanted to give you an update on Thor—he's doing great. The doctors drained 300cc of fluid from his heart, and he'll have the drain tube in for the next two days. They’re still uncertain about the cause of pericardial effusion and why it affects 30% of transplant patients. We should start to see some swelling in his face decrease now that his heart is retaining less fluid. We're hopeful to be heading home by Saturday!

If you're interested in becoming a stem cell donor, text SHOWUP4THOR to 61474. Patients are patiently waiting for you to swab your cheeks and potentially make a difference!

05/22/2025

As the day ends, we're heading back to Duke this evening. Tomorrow at 7:00 AM, Thor will be admitted to the pediatric cath lab for a pericardiocentesis, as advised by pediatric cardiology. Over the past few weeks, Thor has undergone serial echocardiograms, which revealed a moderate to large pericardial effusion that necessitated this procedure. While Thor has an intermittent cough, he is otherwise asymptomatic.

In addition to this, Thor is also facing challenges with GVHD. He still has 98% Sierra cells, but they’re growing too quickly, and his Thor cells are resistant to the change, being quite stubborn. We believe that once his body adapts, the GVHD symptoms will improve.If you've noticed some slight swelling in Thor's face, it's likely due to the fluid accumulation around his heart. We’re hopeful that once the fluid is drained, his face will become slimmer.

Please keep Thor in your thoughts and prayers as he undergoes the drainage of fluid from his heart. Remember to be blessed and live life with purpose.

Text Showup4thor To 61474 to become a stem cell donor.

We didn't take many pictures, but we did capture a few special moments with Principal Mr. McCoy, Mr. Johnson, and Leah T...
05/21/2025

We didn't take many pictures, but we did capture a few special moments with Principal Mr. McCoy, Mr. Johnson, and Leah Thomas. The award ceremony truly made Thor's day!

05/21/2025

We couldn't be prouder of Thor! Today, he received the Principal Award, and it was such a joy to see him so happy to reconnect with his classmates at the ceremony, even if it was just for a little while. We’re excited about the journey ahead for our wonderful 9th grader!

On another note, our advocacy for the National Marrow Donor Program (NMDP) is far from over. We invite anyone between the ages of 18-40 to consider joining the NMDP registry.

To become a stem cell donor, text 'Showup4thor' to 61474. You have the power to make a real difference in someone’s life who needs a stem cell transplant!"


Hello Friends and Family,I wanted to provide you with an update on Thor's health as he reaches the six-month mark post-b...
04/23/2025

Hello Friends and Family,

I wanted to provide you with an update on Thor's health as he reaches the six-month mark post-bone marrow transplant.

Last night, Thor started running a fever around 8 p.m. After consulting with his doctor, we were advised to go to the children’s ER in Greenville. They conducted several tests, all of which came back negative. However, Thor received a dose of Rocephin, an antibiotic, as a precaution. We were discharged from Greenville around 3:00 a.m. and headed to Duke for his 10:15 a.m. appointment.

At Duke, blood samples were taken, and we are currently waiting for the results from the blood cultures. If these cultures indicate an infection, Thor will be hospitalized for treatment of a possible line infection. His white blood cell count and liver enzymes were both slightly elevated.

In addition, Thor has been dealing with swollen tonsils for about two weeks, which have caused his lymph nodes in his neck to swell. We will be returning to Duke on Friday for repeat labs and an echocardiogram (ECHO) of Thor's head and neck soft tissues.

During today's ECHO, some fluid around his heart was detected, and this test will be repeated on Tuesday of next week. On a positive note, his tacrolimus levels are stable, which is encouraging.

This week has been particularly tiring for us, but we understand that bumps in the road are part of the healing process. We are determined to navigate through these challenges.

Thank you all for your continued prayers and support. If you have any questions about the transplant or the donation process, please feel free to email me.

I also want to express our gratitude to everyone who has donated to Thor's fund. We are actively seeking more African Americans to join the NMDP registry. If you are between the ages of 18 and 40, please consider joining today by texting "Showup4Thor" to 61474 to become a stem cell donor for patients in need.

Thank you again for your support!

Exciting update! Thor's Tacrolimus levels have risen from 3.5 to 12.6! While I'm relieved, I can't help but feel a bit a...
04/10/2025

Exciting update!

Thor's Tacrolimus levels have risen from 3.5 to 12.6! While I'm relieved, I can't help but feel a bit anxious since our target range is between 6 and 10. A huge thank you to Thor's incredible team of doctors at Duke for coordinating our labs at Carolina East Medical Center in New Bern. We're hoping to see his levels stabilize between 6-10, so stay tuned for results tomorrow!

Thor is now 169 days post-transplant, and this month has been particularly challenging. The Bactrim he started around March 8 led to a significant flare-up of GVHD, which impacted his Tacrolimus levels.

On a lighter note, Thor joked about how he's glad he no longer looks like Frankenstein!

Please consider becoming a stem cell donor by joining the NMDP registry.

Text Showup4thor to 61474.

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Havelock, NC
28532

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