How You Can Help Veronica Depauli Find a Lifesaving Match

Tyra Hughes, Editor in Chief|October 18, 2019

WEST ORANGE, NJ– There are many joys that come with raising a child, like seeing the smiles on their faces as they grow up, watching from the sidelines as they make their first goal, or cheering them on as they win their first competition. There is the abundance of love and joy that comes in seeing a child grow up, grow taller each year, and run into your arms after a long day at school. These are the very joys that West Orange parents, Federico Depauli and Elise Luciano expected to experience while watching their 9 year old daughter Veronica grow up. But these joys that come with childhood quickly became clouded with uncertainty and worry as Veronica was diagnosed with the rare genetic bone disease, Autosomal Dominant Osteopetrosis Type 2, and has since then struggled to find a life saving bone marrow match.

__________________________________________

Countless pediatricians often reassured Elise Luciano and Federico Depauli that when their then 4 year old daughter Veronica complained of pain in her bones, it was merely the growing pains of childhood that all toddlers go through. Yet in 2017 after looking closely at an X ray, doctors immediately discovered that what was once presumed as “growing pains” was actually Veronica’s bones growing abnormally dense for kids her age. In spite of this discovery, doctors and Endocrinologists throughout New Jersey had difficulty determining what had caused these abnormalities.

In 2017, hematologists at the Children’s Hospital of Philadelphia finally suggested that the overgrowth of Veronica’s bones was caused by the rare genetic bone disease called Autosomal Dominant Osteopetrosis Type 2. The overgrowth of Veronica’s bones, which doctors explained completely alters her bone structure, make her bones less apt to endure major impacts and more prone to fracture. The denser that Veronica’s bones become, the less space that there is for the bone marrow to properly grow, which can ultimately lead to bone marrow failure and can only be cured with a bone marrow transplant. This procedure, however, can only be completed after finding a matching bone marrow donor on the Be the Match registry — which doctors warned would be significantly harder for Veronica because of her mixed Pervuaian, Ecuadorian and Uruguayan background.

Be the Match is one of the biggest bone marrow registries in the world where registered donors provide the promise of life to those seeking a cure to life threatening diseases. Unfortunately, there is not one person out of 20 million registered donors that is a match for Veronica Depauli. For three years, the Depauli family has struggled in the search of a lifesaving match with no luck.

The lack of diversity within the Be the Match registry makes it extremely difficult for people of Hispanic, African American, and Asian backgrounds to follow through with a bone marrow transplant. The problem isn’t that there are no Hispanic bone marrow matches in the nation, it is the fact that they aren’t registered to begin with — as a majority of the registry is made up of Caucasion donors. This lack of diversity within the Be the Match registry, which is only 10% made up of people with Latino and Hispanic backgrounds, continues to threaten the health of Veronica and the countless other children who are desperately in need of a bone marrow donor.

In order to save Veronica’s life, the Depauli family wants the community to share Veronica’s story, learn more about the donation process, and join in a collaborative effort to diversify the Be the Match registry by registering to become a donor. Elise Luciano and Federico Depauli are grateful for all the help from the community that they can get, as a bone marrow donor would significantly transform Veronica’s life.

It has been three years since Veronica’s diagnosis, and unfortunately life with Osteopetrosis and without a bone marrow donor has already taken a major toll on her childhood and her family. Osteopetrosis creates an increased bone density, a higher risk of bone fracture, facial paralysis, impaired vision and hearing, and swelling of the joints which can ultimately lead to bone marrow failure. Veronica has already began to experience pains in her bones, and everyday the threat of facing even more of these harmful symptoms robs her of childhood experiences that we often take for granted.

By doctors notice, Elise Luciano and Federico Depauli must be circumspect about what Veronica can and cannot do in order to avoid bone fractures. At birthday parties, Veronica is not allowed to jump on trampolines or bouncy houses because it runs the risk of her bones dislocating. Due to the constant peril of bone fracture, Veronica has had to quit high contact sports such as soccer and gymnastics. These limitations of Osteopetrosis can sometimes be discouraging to Veronica and her family.

No child should have to feel hopeless, as no parent should have to feel like they can’t provide the life that their child deserves — yet life without a bone marrow donor sometimes makes Veronica and her parents feel this way.

“I always have to constantly tell her you can’t do this, you can’t do that. Sometimes she’ll tell me I can’t do anything... That breaks my heart because she can’t be a normal child… Things that normal kids usually enjoy, I feel like she’s very limited. Unfortunately she notices that and it puts her down a lot.” – Elise Luciano

As a student of Gregory Elementary School, though the staff thoughtfully accommodate Veronica to ensure that she is safe and comfortable, the symptoms of Osteopetrosis often interferes with her school life. Some days when she experiences unbearable pain in her knees, hip or back that neither Motrin nor the icing of her joints can help, she is called home early from the school nurse. Veronica’s mother, Elise Luciano expressed that it is times like these that often leave her family feeling dispirited, yet hopeful of a future where Veronica doesn’t have to suffer without a bone marrow donor.

With tearful eyes, she said: “I think that’s the worst thing any parent can face. Seeing your child in pain and not being able to help them or take that pain away is very hard. Those are the days that we just pray and have hope. We know her match is going to be found we just need help from the community.”

The National Be the Match bone marrow donor recruiter, ICLA Da Silva Foundation, has worked closely with the Depauli family over the past three years to diversify the registry by creating online posts, hosting events, and promoting bone marrow drives. They have made a huge impact on the Depauli family as they bring a lot more publicity to Veronica’s story, and act as a platform to make bone marrow donation more personal to the real experiences of Osteopetrosis patients. Elise expressed that she admires the work of the ICLA foundation because they have a “passion for saving peoples lives” by helping others empathize with Veronica’s life experiences, and consider becoming a donor.

Along with the help of the ICLA Foundation, West Orange Highschool has also held annual Blood Drives within the community in support of Veronica. The WOHS Blood drive last year, which was organized by Physical Education teacher Ozzie Diaz, was very successful as it registered a lot of people and collected a staggering 50 pints of blood. The Depauli family was delighted to know that young students were eager to learn about Be the Match and were helpful in educating others about the donation process, regardless if Veronica had found her match.

So what can you do to help Veronica Depauli?

1. Stay Connected: Click, Comment, Share

Elise Luciano advocates for her daughter Veronica on her social media in hopes of finding a donor, yet a lack of community response and support is often discouraging. A simple click, comment, and share of Veronica Depauli’s story can make all the difference in spreading awareness of her search for a match. You have the power to save someone’s life by starting conversations and learning about what it takes to be a registered donor. If you take the time to really learn about Veronicas life – you’ll know how much of a help you’ll be in registering to Be the Match.

If you want to stay updated on the Depauli family and Be the Match events, you can follow Elise Luciano’s Instagram account, @elisedepauli and follow their Facebook PorVeronica.

“Even if it’s just a quick share, you never know who could see it and who it could inspire to join the registry. Even if someone that joins doesn’t match Veronica, you never know if it could match someone else that’s also desperately searching for their match. When I post, I not only post for Veronica, I also want to inspire others to join.” – Elise Luciano

2. Learn more about the donation process

Initially, bone marrow donation may seem daunting, but Elise Luciano wants the community to know that it’s not as scary as people think. She urges the community to not be afraid, to familiarize with the bone marrow donation and see whether or not donating is for you. BeTheMatch.com is a great resource because if you ever feel uneasy about becoming a donor, it’s a way to learn more about the process before backing out. If you attend Be the Match registration events or bone marrow drives, spread the word of Be The Match and the information that you learn from them. Whether it is by word of mouth or sharing online, you should always be open to learning and teaching others to diversify the registry.

“It’s important to have these conversations about how to diversify the registry and joining the registry. A lot of people hear the word bone marrow and they freak out, they shut down the idea automatically without even becoming educated and learning more about the topic. 80 percent of the time, donating marrow is like donating blood. The other 20% of the time, it would be bone marrow through the back.” – Elise Luciano

3. Register for Be the Match

The great thing about Be the Match is that registering takes no longer than 10 minutes and it can all be done in the comfort of your own home. You must be of ages 18 to 44 to join, and you can register by texting CURE94 to 61474, using the link https://Join.BetheMatch.Org/Porveronica, or scanning the QR below. From there you will sent a a quick cheek swab test in the mail that takes about 30 seconds to complete. After you send your cheek swab to Be the Match, simply wait for your call indicating you are a match for someone in need of a donor. Though you won’t immediately be called to donate, considering the potential impact you could have by registering, it is good to join the Be the Match registry in the long run.

You never know if you can be the 1 person out of the 20 million donors on the Be the Match that can save Veronica’s life until you register, take the time to learn about Veronica, and recognize how much a bone marrow donor can transform her life for the better. Veronica deserves to live the childhood that any other kid is lucky to have in the same way that her parents deserve to watch their child grow up without the pain of knowing that she must struggle living without a donor. With a life saving match, Veronica’s parents imagine her “being able to be a normal kid: [with] no pain, being able to play sports if she wants to, and feeling like she has no limitations.”

With hopeful eyes, Elise Luciano added that imagining a blissful future for Veronica is what motivates her family to keep fighting. Knowing that you can transform Veronica’s life should motivate you to keep fighting for Veronica too. Register to become a donor on Be the Match.com, you could save a life.