You may remember a young boy we have been working with named Asaya Bullock. Asaya suffered from a rare disease called IPEX Syndrome. IPEX is a life-threatening, autoimmune disorder involving the intestines, skin, and endocrine glands. As a result, Asaya has suffered 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 assistance to his family. This video shows 4-year-old Asaya when we first began his search.
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 family continued to ask, and the medical team finally agreed to a haplo transplant. A haploidentical transplant uses healthy, blood-forming cells from a half-matched donor to replace the unhealthy ones. Usually, the donor is a parent, since each of your parents 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 unheard of.
So far, there are no complications and he is eating and drinking on his own, which is a terrific sign.
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
Written by: Bret ItskowitchDallas 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
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 registryAnnual 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 JournalA 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.
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 ItskowitchRhynett’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 18-44 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.
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 ChapmanLack 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.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 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.
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
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!
In Memory: Vivianna Sophia Lane
With tremendous sadness, we were recently notified of the untimely passing of Vivianna Sophia Lane. She died Tuesday, August 7th at the Lurie Children’s Hospital of Chicago. We extend heartfelt condolences to her family, her friends and anyone who was fortunate to come in contact with her. Sophia was a talented, passionate and hard working young woman who was fighting a battle with Acute Lymphoblastic Leukemia. We were working with Sophia and her family in their search to find a matching bone marrow donor. Sophia was 21 years old.
Her family has notified us that they would like us to keep her hope alive; ” if you haven’t done so, please sign up to be a bone marrow donor. One hundred and forty people signed up to save her life, and others. It made her so happy in her last days.”
join the registry
Sophia’s Search for a Matching Donor
Vivianna “Sophia” Lane is a 21 year old college student at Lake Forest College, in Lake Forest, IL, a suburb north of Chicago. She is working towards her bachelors degree, a double major in Business and Studio Art.
Sophia is energetic, creative, outgoing and well rounded. She is passionate about art, golf, singing, biking and swimming. She is hard working. Her dedication to golf includes competing on the boys team in high school, caddying, coaching and working at a golf shop. Her devotion to art encompasses volunteering, two internships and her first solo exhibition at the Evanston Art Center.
Sophia also has B cell Acute Lymphoblastic Leukemia. She was diagnosed last year (November 2017), underwent chemotherapy treatments and relapsed just last month (July 2018). Her doctors are working to get her into remission so that she can undergo a stem cell transplant. Sophia does not have a sibling match and will rely on the Be the Match registry to find a lifesaving donor.
We need to find a matching stem cell donor for Sophia. The only way to do this is to ask more people to join the registry.
Joining is easy. Click the link, setup an account with an email and password, and answer a few questions. A swab kit will be sent to your home. Once you swab the inside of your cheek and return it to Be the Match, you are entered in the registry and included in patient searches.
More than 14,000 patients are searching every year. Their cure is inside you. You may save a life.
Please join the registry for Sophia: join the registry
To find more information about the donation process, please click here.
If you have already joined, please help us share Sophia’s story so that we may get others to consider becoming a potential life-saver.
Veronica’s Story – Searching for a Matching Donor
It was winter and she had a bad cold. The cold had triggered an asthma attack and her parents were worried. They took her to the emergency room. The attending doctor ordered a chest x-ray to rule out pneumonia. Veronica did not have pneumonia…but the radiologist was concerned. Her bones appeared larger than normal for a girl of her age.
After a year of referrals to various doctors – endocrinologists, metabolic specialists, radiologists, and hematologists, after multiple rounds of bloodwork, genetic testing and numerous x-rays, it was determined that Veronica Depauli had hardened bones throughout her body. In March 2016, Veronica was diagnosed with a form of osteopetrosis (autosomal dominant osteopetrosis type 2, or ADO2). ADO2 is a rare disorder characterized by increased bone density and abnormal bone growth, which can lead to recurring fractures, vision loss, hearing loss and facial paralysis. It can also impair the function of bone marrow, because the bones are growing at a disproportionate rate, which will prevent the body from producing new blood cells and immune system cells.
Veronica Depauli is a beautiful, intelligent 7 year old girl. She likes singing and art. You wouldn’t know it by watching her draw, or play with her younger sister Annabelle, that she has a rare disease. You wouldn’t know that her optic canals continue to narrow, which may result in vision loss, or that her bone marrow space has diminished, although it still continues to function. With each passing day, the severity of her symptoms continue to increase. Her little sister helps distract Veronica whenever she is in pain. She brings her ice packs and coloring books and tries to get her to smile by singing. She does the best she can to help her big sister.
Veronica Needs Our Help
Veronica Depauli needs a bone marrow transplant. Her doctors believe it can markedly improve her osteopetrosis and offers the best chance for longer-term survival.
The challenge with every bone marrow transplant is finding a matching donor. The difficulty is finding someone who has a similar HLA type to yours. HLA is a protein, or a marker, found in most cells in your body. Your immune system uses these markers to recognize which cells belong in your body, and which do not. When two people share an ethnic background, there is a better chance that their HLAs will match up and a transplant can take place.
Unfortunately, there are currently no matches in the national database for Veronica. Currently, Hispanic and Latino patients only have a 46% chance of finding a matching donor. This is because only 11% of the current donor pool are Latino. Veronica’s mother, Elise, is of Peruvian/Ecuadorian descent. Her father, Federico, is Uruguayan. We need more people of Hispanic and Latino heritage to join the registry.
Finding a Bone Marrow Donor
The Icla da Silva Foundation is working with the Depauli family to help find a matching donor. We are the largest recruitment center for the Be The Match registry and we focus on adding ethnic diversity to the bone marrow registry. As more people of Latino descent are added to the registry, hope is increased for each of the 16,000 patients who are in need of a bone marrow transplant every year.
You can join the registry, and add hope for Veronica, right here:
join the registry
Veronica’s parents have been very active in spreading the word and trying to get more people to join the registry. Not just for their daughter, but for all of the patients who are in need of a life saving transplant.
“It’s been very discouraging and I am desperate because God forbid my daughter does not get a match” – Elise Luciano, Veronica’s Mom
“Please help us, what would you do if it were your child, your family…please join the registry, you could save somebody’s life” – Federico Depauli, Veronica’s Dad
Joining the Registry
The steps to join the registry are simple:
- Register online by clicking the link.
- Set-up an account with a password, and answer some basic background and eligibility questions.
- Receive a swab kit in the mail so they can get a copy of your HLA marker by swabbing the inside of your cheek with a q-tip.
- Return the swab kit so you can be added to the registry.
If you match a patient in need of a life saving transplant, the vast majority of bone marrow donations occur through a process called PBSC, which is a non surgical procedure that is very similar to giving plasma. If you would like more information on the typical donation process, please click here.
Despite thier continued challenges, Veronica’s parents hold onto the hope that a matching donor will be found.
“One day my daughter will be pain free, one day my daughter will be able to live just like any other child” -Elise Luciano, Veronica’s Mom
We hope so too Elise.
Please join the registry for Veronica Join the registry