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A Match For Lavinia?

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

Her Condition

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.

Looking For A Match

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.

The Challenge

“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

Her Future

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.

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.

join the registry


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