Young Girl in Need of a Bone Marrow Transplant

Her search for a potential donor has been affected by the COVID-19 pandemic.
 
NEW YORK - April 17, 2020 - PRLog -- Veronica Depauli is 9-years-old from West Orange, NJ. She suffers from a rare genetic bone disorder called Autosomal Dominant Osteopetrosis Type II. Her only chance to survive is to find a matching stem cell donor. Sadly there is no match in her family. There is also no match on the national listing of potential donors, the Be The Match Registry.

Before COVID-19, Lauren Hero, from the Icla da Silva Foundation (the largest recruitment center for Be The Match) was spearheading the effort to find a matching donor for Veronica. Mrs. Hero worked closely with the family over the last 2 years, hosting live registration drives. The goal at those drives was to add more donors to the registry, with the hopes of finding a donor.

Since March 13, Be The Match has cancelled all live drives due to the coronavirus. For the Icla da Silva Foundation, this has resulted in the cancellation of 137 drives through the end of April. This translates to approximately 13,000 fewer life-savers added to the registry.

On top of COVID-19, Veronica was also facing another challenge due to her Hispanic heritage. She has struggled to find a fully matched stem cell donor, despite a registry of 20 million donors. Patients have a greater chance of finding a match with someone of the same ethnic background. Unfortunately, only 8 percent of the registry is Hispanic. More people from diverse ethnic backgrounds are needed to register as potential donors. One of them may be a match for Veronica.

Now the Icla da Silva Foundation is focusing on educating the public about how easy it is to register from the comfort of your home. There are three steps to save Veronica's life:

Step 1: Register online at http://join.bethematch.org/porveronica
Follow the prompts to fill out your contact information and order your swab kits.
Step 2: Swab Your Cheek: You will receive your free swab kit in the mail within 3-7 business days. This swab kit will match your tissue type to those on file.
Step 3: Save Veronica: You will only donate if you are a match. Only 1 out of every 430 potential donors match a patient. Be The Match will call you if you are a match. If you do not match right away, your name will stay on the registry unless you withdraw.

We invite everyone aged 18 - 44 to register through the link or by texting:porveronica to:61474.

With concerns about donor safety, Be The Match handles each case individually and takes every precaution to ensure donors are healthy and safe.

Follow Veronica's journey on her Facebook Page - PorVeronica

Contact
Bret Itskowitch
***@icla.org
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