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This is Lavinia, from Pingree Grove, IL, 48 miles outside of Chicago. This beautiful young girl is suffering from a rare, life-threatening, autoimmune disease and she needs your help.
Her cure exists. It’s inside you…one of you. We just don’t know which one. You may be the match that saves her life, you simply need to join the registry and agree to donate if you match.
join the registry
Lavinia De Oliveiria Santos has a condition called IFN-gamma receptor 1 deficiency. Her body is unable to fight off infections, some of which may be life-threatening. Her doctors have told the family that the best possible treatment is a stem cell transplant.
She currently takes six medications a day to help fight against infection. She also receives weekly injections to strengthen her immune system. Obviously, her parents are doing their best to keep the home disinfected in order to minimize the risk of any infection.
Her parents are a half match for Lavinia, but the doctors would prefer a 100% match. Her doctors are searching the Be The Match registry for an unrelated donor.
Becoming a potential donor is simple. You can register online by clicking the link. Once the registration is finished online, Be The Match will mail you a swab kit with easy-to-follow instructions on how to complete the process at home. When you return the kit in the mail, you will be included on the registry.
About 1 out of every 430 people included on the registry go on to donate to a patient. Only people identified as a genetic match for a searching patient are asked to donate blood stem cells.
“We urgently need more Latinos to join the registry so my daughter can find a match” -Gilmar Santos, Lavinia’s father
Lavinia’s search for a matching donor is more difficult because of her Brazilian ethnicity. People are more likely to match someone with the same ethnic background. Even though the Be The Match Registry is the largest and most diverse registry in the world, only 7% of the 19 million+ members identify as Latino. Unfortunately, the result is that Latino patients like Lavinia only have a 46% chance of finding a fully matched donor, compared to a 77% chance for those who are White. There simply aren’t enough people of various ethnicities included on the registry. Please add yourself, and ask your friends and family to do the same.
join for lavinia
Lavinia turned 6 in July. She loves to dance, sing and play as a princess. She enjoys vanilla ice cream and of course, she loves Brazilian food. Lavinia is crazy about animals and insists that she will be a veterinarian when she grows up. She is a girl with many dreams and we would like to see them all happen.
join.bethematch.org/LoveForLavinia6 year old Lavinia Santos loves to sing and dance and has many hopes and dreams. She also needs your help. Lavinia was diagnosed with IFN-gammaR1 deficiency when she was 2, and needs a stem cell transplant to survive. Her only hope is an unrelated donor, and we are asking everyone 18-44 years old to join the Be the Match Registry to possibly save Lavinia or another patient in need.Just click on join.bethematch.org/LoveForLavinia. You will register and fill out a fast online form and cheek swabs will be mailed. It’s that easy! Please share this post publicly and help Lavinia find her match!❤️
تم النشر بواسطة Love for Lavinia في الخميس، ٦ ديسمبر ٢٠١٨
Please join the registry and help us find her cure. If not for Lavinia, than for one of the 14,000 other patients who are desperately searching for their match.
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Patient Update: Mighty Mikey Sexton
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!
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!