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A Home Run For Kobe

Nine-Year-Old Kobe is Now Cancer-Free and Playing Baseball Again!

Kobe Washington was playing his favorite game, baseball, when he fell ill. He had just turned eight-years-old and was on a baseball trip with his family. His parents noticed that Kobe seemed sluggish. The lymph nodes around his neck were swollen and he had a slight fever, so they took him to a local hospital.

Soon after arriving, the doctors had him airlifted to Johns Hopkins All Children’s Hospital in St. Petersberg, Florida.

Kobe was diagnosed with T-cell lymphoblastic leukemia, an aggressive blood cancer.

That was in August of 2020. Since then, it has been a whirlwind year for Kobe and his family.

The Challenges of Blood Cancer

His little body had to withstand all of the treatments that come with blood cancer; chemo, emergency surgeries, blood transfusions, spinal taps, kidney issues, hypertension, and radiation.

There were many challenges, but Kobe managed them all like a true sportsman, he was always smiling, always positive.

Due to the severity of his cancer, Kobe’s parents had no choice but to quit work. He required 24/7 caretaker support, even while in the hospital. His parents split their time between watching over Kobe and caring for their other children.

Icla Cares

The Icla da Silva Foundation was happy to be able to provide some financial assistance while we continued the search for a matching donor.

Thousands signed up to become potential donors, and we were grateful, but no one matched Kobe.

His time was running out.

A Successful Transplant

In March of 2021, seven months after diagnosis, Kobe’s medical team decided to transplant blood stem cells from his father, even though he was only a 50% match.

Surprisingly in June, 100 days later, Kobe’s bone marrow biopsy showed 100% donor origin, with no trace of leukemia.

Kobe is now nine-years-old and cancer-free.

He still has to visit the hospital every two weeks for check-ups, but he is building back his strength and Kobe is playing baseball again!

We are very happy for him and his family. Good news like this cannot be celebrated enough.

We wish him a happy return to childhood…and many more baseball games.

You can help us support more patients like Kobe.

PLEASE DONATE

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Do You Remember Alfredo?

Even though a donor hasn’t been found, Alfredo is still smiling.

He is the little boy from Chicago with a rare blood disorder. We have been helping him search for a matching blood stem cell donor.

He has been searching the registry for 5 years.

We recently ran a Facebook campaign about Alfredo and many people expressed an interest in helping.

Almost 200 people signed up online to become potential donors.

Although he still hasn’t found a matching donor, Alfredo seems to be doing OK. He was excited to go back to school, he started the 4th grade in September.

Would you be interested in helping us support more patients like Alfredo? Even the smallest donation will help blood cancer patients during their search and treatment.

Your gift gives patients and their families more hope for a positive outcome. It allows them to focus on treatment rather than bills.

Please support the Icla da Silva Foundation and our mission to save more lives.

HELP US SUPPORT MORE PATIENTS

 

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Asaya’s Birthday Success Story

After 9 years, Asaya finally received his bone marrow transplant – three days before his 10th birthday!

You may remember Asaya Bullock from earlier stories on our website and social media pages. Asaya suffered from a rare disease called IPEX Syndrome. IPEX is a rare, life-threatening, autoimmune disorder, which caused Asaya to suffer from severe stomach issues, migraines, body aches, rashes, and joint pain for most of his young life.

His only cure was a matching bone marrow donor.

We have been working with Asaya since 2015, recruiting potential marrow donors and providing urgent needs assistance for his family. This video shows 4-year-old Asaya when we first began his search.

There Was No Matching Donor

While thousands of donors were added to the national registry in Asaya’s name, a matching donor was never found.

As Asaya got older, his illness became worse. His health was deteriorating. He was in and out of the hospital multiple times in recent months.

After his original diagnosis, the doctors didn’t believe he would survive past the age of two. He was already living on borrowed time.

Can you imagine the pain and perseverance that his parents have lived with…

“You don’t ever sleep because you know at any point in time your baby could lie down next to you and he doesn’t wake up” – Charlene Bullock

“He doesn’t give up. I don’t give up. We don’t give up” – Vincent Bullock

A Rare Success

The medical team agreed to the family’s request for a ‘haplo’ transplant. A haploidentical transplant uses healthy, blood-forming cells from a half-matched donor. The donor is usually a parent – since each parent represents about half of your genetic make-up.

They are not always successful.

On July 27, 2021, Asaya received a half-matched transplant from his dad.

The transplant was successful.

 

 

 

Three days after his transplant, on July 30th, Asaya celebrated his 10th birthday!

 

 

 

 

Asaya seems to be doing fine. His body successfully accepted 99.4% of the cells. His doctor says this was rare.

So far, there are no complications and he is eating and drinking on his own, which is a terrific sign.

Next Steps

Fortunately, there was room at the Ronald McDonald House in NYC. Asaya will have to stay for 120 days, remaining close to his hospital while they continue to check his progress.

We wish Asaya a long, healthy, pain-free life…with many, many more birthdays to celebrate!

Help us support more patients like Asaya by considering a donation

Written by: Bret Itskowitch

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Dallas Teen Waiting for Bone Marrow Transplant Inspired by Captain America – The Dallas Morning News

For a year and a half, 15-year-old David Mojica has faced a villain, called aplastic anemia, which is attacking his blood system. David and his close-knit family won’t let it defeat him.

Read the story in The Dallas Morning News

 

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Fort Myers Woman Meets German Stem Cell Donor – FOX 4 Now, Southwest Florida

Andrea McCarraher was diagnosed in September 2015 and after rounds of chemo, she was placed on a list for a stem cell donation.

The donation eventually came via 26-year-old Daniela who lives in Germany.

According to Daniela, signing up to donate stem cells is pretty common there.

“It’s not special… A lot of people do it.”

It may be no big deal in Germany, but it was life-changing here in Fort Myers, where Andrea says she aims to make the most of her second chance at life by encouraging others to donate.

Read the story from Fox 4 News in Southwest Florida here..

Watch the video

Inspired to jon the registry and potentially save someones life?

join the registry

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Annual Softball Tournament Swings for ‘A Good Cause’ – NJ.com

“Back in 2010, “Lil” Ricky Roman was one of 12,000 Americans who needed a bone marrow transplant. Now, nine years later, his family continues to pay it forward.”

The Roman family has been holding this tournament every summer for the past 9 years. We are grateful for their continued support.

– Read the story here by by Adrienne Romano | The Jersey Journal

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A Soldier Receives a Spider Bite in Afghanistan and they Find Leukemia

Miguel Leyva Campos grew up with his family on Catalina Island, just a one-hour ferry ride from Long Beach, CA.

He enlisted in the Army after High School and was eventually deployed to Afghanistan.  After a year in Afghanistan, and only one week before returning home, Miguel was bitten by a spider. 

Miguel told us that after the bite, he was noticeable tired and nauseous. He had unexplained body pain and he often felt faint. Was this from an Afghan spider bite?

Upon returning to the U.S., he mentioned his symptoms to the doctors during his post-deployment medical check. In 2013, after testing, Miguel was diagnosed with Acute Lymphoblastic leukemia (ALL). It had nothing to do with the spider.

He went through chemo while attending Long Beach City College. Over time, his body went into remission and he began to feel strong again. Tests showed no evidence of disease.  He eventually became employed by harbor patrol and his life progressed.

In April of 2019, memories of that spider bite came back to him. Miguel became nauseous and tired again. Blood tests revealed that his cancer had returned.

He is now back on chemo treatments and doctors have recommended a stem cell transplant.

Miguel’s Next Battle

His next battle is not on the fields of some far off land.  Miguel is fighting to find a cure, right here on U.S. soil. He is searching for a matching blood stem cell donor.

Despite everyone being tested, there is no match in his family. Of all the cancer patients in need of a stem cell transplant, 70% turn to Be The Match and the National Bone Marrow Registry. They need to find an unrelated donor. 

Miguel’s doctors have been checking the Bone Marrow Registry and there is no matching donor for him.

Not yet.

His battle with leukemia will be difficult enough. But because he is Hispanic, this veteran has a lower chance of finding a matching donor. There simply aren’t enough Hispanics and Latinos on the Registry.

Hispanic cancer patients only have a 46% chance of finding a matching donor. White patients have a 77% chance of finding their donor.

We Are Here to Help

The Icla da Silva Foundation is joining Miguel in his battle with Leukemia.  We are the largest recruitment center for Be The Match and we focus on adding more diversity to the registry. Our mission is to ensure that all patients have a greater chance of finding their matching donor.

You can help us in this fight.  Include yourself on the Registry by clicking the link below. You will set up an account, answer some basic questions and then you will receive a swab kit in the mail.

After returning the kit, you will be included in the Registry.  Only 1 out of every 430 people who register, end up matching a patient in need…so we must add as many potential life-savers as we can.

Join us in this latest battle. We need to find a match for Miguel.

join the registry – help miguel

Written by Bret Itskowitch

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Rhynett’s 2nd Battle With Cancer

More than 25 years ago, Rhynett Chatman was diagnosed with cancer. She fought that battle and was fortunate to survive.

Now she is fighting cancer once again.

In May of 2017, she was diagnosed with Myelodysplastic Syndrome (MDS). MDS is a form of blood cancer which prohibits the body from producing enough healthy blood cells in the bone marrow.

Rhynett told us that she always felt tired, and she lost a considerable amount of weight. Despite chemotherapy and numerous blood transfusions, there was no improvement in her condition.

Most Recent Diagnosis

Recently, her diagnosis was changed to Acute Myeloid Leukemia (AML). There was a definitive overproduction of immature blood cells in her bone marrow. AML quickly gets worse if it is not treated immediately.

Doctors advised Rhynett that she would need a bone marrow transplant in order to survive.

Searching for a Match

For African American patients with various blood cancers like leukemia, finding a matching bone marrow donor is a difficult task. The chances of finding a match on the national registry are only 23%. There simply aren’t enough Black donors on the registry. For comparison, White patients have a 77% chance of finding a matching donor on the registry.

We are trying to change this unfortunate fact.

The Icla da Silva Foundation is the largest recruitment center for the Be the Match registry. Our efforts are focused specifically on adding more diversity to the list of potential donors.

We are trying to help Rhynett find a matching donor by holding donor drives. We share her story, explain the need, and provide details on joining the registry and donating stem cells if you match a patient in need.

Anyone between the ages of 18-40 can join the registry at no cost.  If you match a patient, they don’t even use your insurance to perform the transplant.  Be the Match takes care of everything.

To join the registry in support of Rhynett, please click this link:

join the registry

Rhynett’s Search for a Donor

Unfortunately, there is no matching donor in her family. And there is no match for her on the national registry.

Not yet.

We are doing everything we can to share her story and enable more people to join the registry on her behalf.

Rhynett tells us that her body hurts. “I get tired easily. I have been receiving blood transfusions for months now…it’s all very overwhelming, but God is in control”.

She is grateful for the support of her friends and family. She is also thankful for her church family at the Northside Church of Christ in Jacksonville, Florida. She has been worshipping at Northside since she was 14 years old.

She Has Faith

Despite her battle with this life-threatening disease, Rhynett has faith that God will provide.

She enjoys reading, traveling, and singing. She has traveled and sung extensively, trying to be an encouragement and a blessing to the Brotherhood of her church. She loves singing and spreading the “Good News” through the gift that God has blessed her with.

Rhynett sang for many years with her church group Total Praise, as well as the Northside Acappella Mass Choir.

“Singing has always been the thing that kept me motivated and content. I miss it so much.”

Unfortunately, chemotherapy has affected her vocal cords.

Join the Registry

Please help us in Rhynett’s search to find a matching bone marrow donor. Join the registry. After clicking the link, follow the prompts to create an account and register to become a potential donor.

You can also help us spread the word by sharing Rhynett’s story.

join the registry

“I know if you can help in any way, you will. May God bless each of you for your kind hearts and loving spirits.”

-Rhynett Chapman

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Lack of Black Donors Not Helping a Mother’s Search / NY Amsterdam News

Charlene Bullock remembers the first time she knew something was wrong with her seven-year-old son, Asaya.

Read the full story here.

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Patient Update: Mighty Mikey Sexton

Patient Update: Mikey Sexton – August 22, 2018

Mikey met with his pediatric CML specialist a few weeks ago and he is doing great! The tyrosine kinase inhibitors (his TKI medication) are working and his chronic myeloid leukemia levels are very low. He starts school next month and his family is very happy.

We are happy also. Way to go Mikey!


Mighty Mikey Sexton – May 16, 2018

Did you know that an orange ribbon promotes leukemia awareness and shows support for leukemia survivors and their family and friends?  Orange also happens to be Mikey Sexton’s favorite color. It’s a strange coincidence because seven year old Mikey was just recently diagnosed with CML (chronic myeloid leukemia) and is in need of a bone marrow transplant.

CML is a rare form of blood cancer that typically affects older adults, so it is rarer still to be diagnosed with CML as a young child.  It begins in the blood forming cells of the bone marrow, and eventually spreads to the blood. CML is a fairly slow growing leukemia, but it can also change into a fast-growing acute leukemia that is hard to treat.

Mikey’s Mom & Dad

Mikey’s father, Mike Sexton, who is a corrections officer and volunteer fireman says, “he was really tired, kind of pale, and not really acting like himself.”  After his diagnosis, and a week at the hospital, Mikey spent 2 weeks at home taking oral chemotherapy drugs.

Mikey and his brother

His doctors believe that a bone marrow transplant will be his only hope for a cure.  Mikey’s younger brother was tested, but he is only a 50% match.

This is where the Icla da Silva Foundation steps in.  Patients like Mikey, who need a transplant, rely on us to help them find a matching bone marrow donor.  We have begun working with Mikey’s family to schedule marrow drives, asking people to join the Be The Match bone marrow registry.  You can join the registry by by attending one of our drives, or you can join online, providing basic contact information and some medical history.  Be The Match sends out a swab kit, with simple directions to capture your HLA type, and you will be entered in the registry with the hopes of matching a patient in need of a marrow transplant.

There are more than 14,000 patients with various forms of blood cancer who can be saved if they are able to find a matching donor.  The online process to join the registry takes 8 minutes. If you match a patient and agree to become a donor, the gratitude and understanding that you saved a life lasts a lifetime.

You can join the registry in honor of Mikey right here, you may be his match.joIN the registry

Another way that you can help is by spreading the word about Mikey’s story.  You can share this story by using the links below, and ask your friends to consider joining the registry.  If you have access to a larger group of people – through an employer, a club, a school or a church organization, you can host a drive in honor of a patient.  We do most of the work, you simply have to fill out the request form here  and make the introduction.

You can also help the family directly by making a donation to their personal gofundme page.

Mikey was deemed healthy enough to go back to school, and he couldn’t be happier.  This video from his hometown Spectrum News, shows the overwhelming support received at his elementary school.

Warm Welcome to Classmate Battling Leukemia from Spectrum News

http://http://spectrumlocalnews.com/nys/capital-region/news/2018/04/09/fort-ann-students-offer-warm-welcome-to-classmate-battling-leukemia#

Mikey loves hockey

Mikey is a sweet boy who loves being with his friends.  Although he was very excited to return to school, his parents have decided it would be best for him to attend ½ days, since Mikey is physically exhausted and can’t make it through a full day.  

He likes reading, playing hockey and being a tiger scout…and of course, he also loves the color orange.  We have high hopes for a matching donor, and when the time is right, a successful transplant. Keep going Mikey!

 

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