It required a coordinated effort of logistics, financial assistance, and of course emotional support to create this life-saving journey.
You may remember a young patient we worked with named Victor Garcia. At the age of 9, Victor was diagnosed with acute biphenotypic leukemia (BAL), a rare form of leukemia. He was being treated at a hospital in his home country of the Dominican Republic. His doctor determined that the only cure for Victor was a bone marrow transplant from a matching donor.
But there was no matching donor on the registry.
Since siblings represent the best chance for a match, the Icla da Silva Foundation was able to fund HLA testing for his 7-tear-old sister Neyyleyn.
We were happy to find out that Neyyleyn was a 100% match for her brother Victor. But unfortunately, the local hospital did not have the resources to perform the transplant.
Emotional, Logistical, and Financial Support
The Icla da Silva Foundation went into overdrive. We supported Victors’ family and helped coordinate his transplant under a clinical trial at Yale New Haven Teaching Hospital in Connecticut. Our team worked the logistics between the family, the doctors, and the consulates from both countries, assuring that Victor would be able to receive a life-saving transplant.
Thanks to financial support from donors like you, we were also able to fund transportation for the Garcia’s to the United States, while the Ronald McDonald House graciously provided housing.
It took many steps and multiple partners, but a little boy’s life was saved. The Icla da Silva Foundation is both proud and happy to have played a critical role.
Victor is doing well, he is back home in the Dominican Republic; going to school and playing baseball.
You can help us create more life-saving stories like Victors. Please consider a financial contribution to our Icla Cares program.
Donor Needed: Local Boy Needs Bone Marrow Transplant – Sun Port Charlotte
Jakobe Washington, an 8-year-old boy from Punta Gorda, Fl only wants one thing for Christmas this year…a matching bone marrow donor to save his life.
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
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!
PATIENT UPDATE: Mission of Joy – Creating Superheroes
In early July of 2017, Aashim Joy was diagnosed with ALL (B-Cell Type Acute Lymphoblastic Leukemia). His only hope for a cure is a matching bone marrow transplant, and we first reported his story here.
Aashim is currently in remission, which is good news, at least temporarily. For leukemia patients undergoing chemotherapy, remission means that there is ‘less’ cancer in the body. Unfortunately, the chance of a relapse, or a recurrence of cancer, remains high and it is important that they maintain their treatments, and continue their search for a matching bone marrow donor.
Aashim Joy lives up to his name, literally. He is in good spirits, always positive and usually ‘joyful’. He is very focused on spreading the word about joining the registry and supporting patient services.
Spreading Awareness / Creating Superheroes
Recently, he attended and spoke at our 5K in NYC, he also talked about his journey at our Mix & Match event last month. If you attended either event, you heard Aashim speak about becoming a superhero. He is on a mission, he wants to create superheroes. He is devoted to educating as many people as possible about the importance of registering to become a bone marrow donor, and staying committed if you are identified as a match for someone. He wants everyone to understand how meaningful it is to save a life and thus, how easy it is to become a superhero.
Working with bone marrow patients for the last 25 years, we know he is right. We understand that reaching out to friends and posting on social media does not generate the numbers necessary to save the many lives who are in need of a matching donor. Try as we may, enough people don’t understand how simple the process of registering is. They fail to recognize that the vast majority of bone marrow donations are neither painful, nor invasive. As Aashim says – “There are a lot of misconceptions associated with bone marrow transplant, and most folks don’t really feel it’s worth the effort to wake up on a Sunday morning and register as a donor.”
Aashim, along with his beautiful and intelligent wife Reema, stand behind this mission, to raise awareness and increase support. From their apartment in NYC, Aashim and his wife have spearheaded many bone marrow drives throughout India. His friends at Deloitte put together a fundraising team and participated as ‘Run For Joy’ in the MatchMaker 5K. Aashim even donated his birthday to the Icla da Silva Foundation, helping our efforts to provide more patient support services to those in need.
Supporting and Fundraising
Aashim donated his birthday by setting up a simple donation page. He went to www.icla.org/get-involved and clicked on “Fundraise with Us.” From this link, he easily developed an online fundraising page. Aashim wrote a short paragraph about his experience, and then posted the link to his Facebook page, inviting his friends and followers to get involved. The fundraiser lasted until his birthday, and raised 120% of the goal! Thank you to Aashim and all his friends and family for taking this extra step to ensure that more patients who need a bone marrow transplant can find a match. You are all superheroes and you are all saving lives!
It’s so easy to start a fundraiser for the Icla da Silva Foundation. Follow the same steps as Aashim, customize your fundraising page, and share with your friends and family. It doesn’t have to be your birthday to get involved. Whether you’re running a marathon, remembering a loved one, or celebrating an anniversary, any time is a good time to be a superhero and help save lives.
You can be a Superhero!
Everyone between the ages of 18-44 can be a superhero. Start by joining the registry in honor of Aashim https://join.bethematch.org/gettestedforjoy. If you want to make a donation to Aashim’s birthday fundraiser, you can still do so here.
Thank you to Aashim, and his wife Reema, for your continued efforts to spread awareness about blood cancers and the power of joining the Be The Match registry; saving a life can make anyone a superhero.
Renata Has Faith
Renata Coimbra is full of life. She is always smiling and spreads joy wherever she goes. She is very close with her family and friends, she worries about those less fortunate, and she regularly contributes to her church and her community. She is recently married, a positive role model, and faithfully leads others in prayer.
Renata was recently diagnosed with leukemia and is in desperate need of a bone marrow donor. She has begun an aggressive treatment of chemotherapy and she knows that she has a long and difficult path ahead, but she has faith that she will find a matching donor.
In 2001, she moved from Espirito Santo in southern Brazil, to Boston, Massachusetts, where she worked as a house manager and loving nanny for 13 years. Missing the tropical climate of her childhood, Renata moved to Florida in 2014, where she met and married her love, Danilo. Together, they enjoy music and movies, regularly attend church, and spend time with Danilo’s family, who has accepted her as their own.
Late last year, Renata was suffering from shortness of breath. After multiple visits with doctors and specialists, she was unexpectedly diagnosed with a lymphoma that had formed in her chest and attacked the bone marrow. It quickly developed into leukemia. She has been told that even with chemo treatments to fight the cancer in her blood, a bone marrow transplant will be necessary to ensure her survival. After multiple treatments and two hospitalizations in the short timespan since she has been diagnosed, she has been forced to quit her job and live a remarkably different lifestyle.
Before she got sick, Renata and Danilo enjoyed dancing and going to the beach on weekends. Although she misses work and her Zumba class, she has never lost faith that she will overcome this disease.
Renata’s faith is overwhelming. Early in the search, they found three matching donors. Unfortunately, none of them were ready to make the commitment to donate. Renata insists that she has the support of God, friends and family, and a matching donor will come through.
While we certainly hope that everyone who registers is able to stay committed if they ever receive the call, it is important to recognize that the vast majority of bone marrow patients require a non-surgical process called peripheral blood stem cell donation (PBSC).
A PBSC bone marrow transplant requires a donor to take injections of filgrastim over the course of 5 days, which increases the number of blood forming cells in your blood stream. On the day of donation, your blood is removed through a needle in one arm, passed into a machine that separates the blood forming cells that your body has produced, and then your blood is returned back into your body through the other arm.
The process is relatively simple.
Please consider registering to become a potential bone marrow donor for Renata and the many other patients who are looking for a match.