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It was winter and she had a bad cold. The cold had triggered an asthma attack and her parents were worried. They took her to the emergency room. The attending doctor ordered a chest x-ray to rule out pneumonia. Veronica did not have pneumonia…but the radiologist was concerned. Her bones appeared larger than normal for a girl of her age.
After a year of referrals to various doctors – endocrinologists, metabolic specialists, radiologists, and hematologists, after multiple rounds of bloodwork, genetic testing and numerous x-rays, it was determined that Veronica Depauli had hardened bones throughout her body. In March 2016, Veronica was diagnosed with a form of osteopetrosis (autosomal dominant osteopetrosis type 2, or ADO2). ADO2 is a rare disorder characterized by increased bone density and abnormal bone growth, which can lead to recurring fractures, vision loss, hearing loss and facial paralysis. It can also impair the function of bone marrow, because the bones are growing at a disproportionate rate, which will prevent the body from producing new blood cells and immune system cells.
Veronica Depauli is a beautiful, intelligent 7 year old girl. She likes singing and art. You wouldn’t know it by watching her draw, or play with her younger sister Annabelle, that she has a rare disease. You wouldn’t know that her optic canals continue to narrow, which may result in vision loss, or that her bone marrow space has diminished, although it still continues to function. With each passing day, the severity of her symptoms continue to increase. Her little sister helps distract Veronica whenever she is in pain. She brings her ice packs and coloring books and tries to get her to smile by singing. She does the best she can to help her big sister.
Veronica Depauli needs a bone marrow transplant. Her doctors believe it can markedly improve her osteopetrosis and offers the best chance for longer-term survival.
The challenge with every bone marrow transplant is finding a matching donor. The difficulty is finding someone who has a similar HLA type to yours. HLA is a protein, or a marker, found in most cells in your body. Your immune system uses these markers to recognize which cells belong in your body, and which do not. When two people share an ethnic background, there is a better chance that their HLAs will match up and a transplant can take place.
Unfortunately, there are currently no matches in the national database for Veronica. Currently, Hispanic and Latino patients only have a 46% chance of finding a matching donor. This is because only 11% of the current donor pool are Latino. Veronica’s mother, Elise, is of Peruvian/Ecuadorian descent. Her father, Federico, is Uruguayan. We need more people of Hispanic and Latino heritage to join the registry.
The Icla da Silva Foundation is working with the Depauli family to help find a matching donor. We are the largest recruitment center for the Be The Match registry and we focus on adding ethnic diversity to the bone marrow registry. As more people of Latino descent are added to the registry, hope is increased for each of the 16,000 patients who are in need of a bone marrow transplant every year.
You can join the registry, and add hope for Veronica, right here:
join the registry
Veronica’s parents have been very active in spreading the word and trying to get more people to join the registry. Not just for their daughter, but for all of the patients who are in need of a life saving transplant.
“It’s been very discouraging and I am desperate because God forbid my daughter does not get a match” – Elise Luciano, Veronica’s Mom
“Please help us, what would you do if it were your child, your family…please join the registry, you could save somebody’s life” – Federico Depauli, Veronica’s Dad
The steps to join the registry are simple:
If you match a patient in need of a life saving transplant, the vast majority of bone marrow donations occur through a process called PBSC, which is a non surgical procedure that is very similar to giving plasma. If you would like more information on the typical donation process, please click here.
Despite thier continued challenges, Veronica’s parents hold onto the hope that a matching donor will be found.
“One day my daughter will be pain free, one day my daughter will be able to live just like any other child” -Elise Luciano, Veronica’s Mom
We hope so too Elise.
Please join the registry for Veronica Join the registry
Patient Update: Asaya Bullock
Asaya loves karate, the color blue, and his little sister Anaya. They are best friends and they get along like two peas in a pod. He is a fun-loving little boy who is surrounded by loving parents and the support of family and friends, but he needs your help.
We have been working with Asaya Bullock and his family since 2014. Asaya has been the focus of 163 bone marrow donor drives, where we have registered 2487 potential donors on his behalf, and we continue to stand by his family for emotional, logistical and financial support. Unfortunately, these efforts have not been enough to find his cure.
This beautiful little boy needs your help.
At the age of 8 months, Asaya was diagnosed with a rare autoimmune disease called I-PEX. His parents were told he would not live past the age of two. You can read more about his story here.
In July, Asaya will be 7, which means that he has been living with this rare disease for almost seven years. He is enrolled in first grade, but he misses class often due to his compromised immune system. This past winter was rough on the family; the flu lasted for 6 weeks and Asaya lost a lot of weight. He receives IgG treatments (Immunoglubulin replacement therapy) every other week, administered by his mom so they don’t have to spend so much time traveling to the doctor. The treatments hope to increase the IgG levels in his blood, which to help fight infections.
Asaya is in desperate need of a matching bone marrow donor. His father Vincent is African American, and his mother Charlene is West Indian Caribbean. Unfortunately, Asaya’s ethnicity is under represented in the bone marrow registry. Not enough potential donors have joined, so a match has not yet been identified. Could you be his match? Do you have friends or family that could be a life saving match? Please consider joining the registry here http://join.bethematch.org/TeamAsaya. Share this post with your social media network and ask your friends to join using the links below. Get involved and host a marrow drive in your community to register more potential life savers. Learn how to do that here.
Thanks for reading, registering, and sharing. We need to work together to find a match for little Asaya.Unique Ties That Bind
Charles and his brother William are very unique. Like many other sibling relationships, they love each other, but they still fight. They have many similarities, but at times, they are also polar opposites. They are both avid skiers, but they live in Puerto Rico. And while one brother was suffering from HLH, the other was able to donate his blood stem cells to save his brother’s life.
William Flaherty, the younger brother, was diagnosed with HLH (hemophagocytic lymphohistiocytosis) at the age of 3. HLH is a rare and life threatening condition seen more often in children than in adults. The immune system doesn’t shut off as it should, and begins to go throughout the body attacking the patient’s organs.
The only cure for William was a replacement of his immune system through a bone marrow transplant. The challenge with every bone marrow transplant, is finding a matching donor. While most patients only have a 25% chance of finding a successful sibling match, William’s brother Charles was a perfect match. Those Flaherty boys are unique.
When asked about donating his stem cells, Charles, then 7 years old, was willing, but confused about the process. His parents, Dennis and Ann, shared all of the information with him and talked about the surgical procedure. Every surgery includes concerns, but Charles was ready to have his stem cells harvested so that they could be transplanted to his little brother. When asked about the procedure, he insists that the only discomfort he remembers was taking the bandage off. The surgery occurred on a Thursday; Charles was back in school on Monday.
When asked how they felt, and what was going through their minds during the harvest and then the transplant, both boys have the same perspective. “It’s ancient history…why do you adults keep talking about it?”
Both procedures were successful, and the brothers are happy and healthy, loving and bickering with one another.
When Charles is asked what he thinks now about donating his cells to his brother he says “it really wasn’t that much trouble and I’d do it again in a heartbeat.” When William is asked about his older brother stepping up to save his life, he replies, “it’s cool.”
This year, Charles Flaherty will be competing in the 2018 Winter Olympics in PyeongChang, South Korea. He is the “Mono-Estrellada,” the single star on the Alpine ski team for Puerto Rico; not unlike the single star on the Puerto Rican flag. This year marks the return of Puerto Rico to compete in the Winter Olympics for the first time since 2002.
Charles was introduced to skiing on a father/son trip following the success of his little brother’s transplant. The trip was intended to provide Charles with some special attention, something outside of the ordinary, with a focus on him; something unique.
Charles took to skiing like a fish to water. The family made annual trips to Colorado, and they were able to schedule time with the same ski instructor each year. After a few years, the instructor insisted there was nothing more he could teach Charles recreationally, he should learn to race.
In December, the Puerto Rico Olympic Committee gave their Winter Athletes Federation (FPAI) a 6 month approval of membership, so Charles Flaherty will compete in Alpine skiing at the 2018 Winter Olympics, representing Puerto Rico. With his family behind him, Charles was committed. He continued training, and competed in over 100 races before receiving Olympic Committee approval. We wish Charles well in the Winter Olympics and we are proud of his dedication and commitment to his brother, his family, and to his sport.
We encourage you to root for him and we ask you to consider joining the Be the Match registry and staying committed, just like Charles. If you receive that call, asking on behalf of a patient who needs a bone marrow donation, please remember Charles.
To learn more about how you can make a difference in the lives of patients in need of bone marrow transplants and other diseases such as HLH, click here.
Click the button below to Join the Registry:
It’s Sunny in Chicago
Chicago, the windy city, is known for jazz, Al Capone, deep-dish pizza, and die-hard sports fans. They have the Sears tower, they dye their river green on St Patrick’s Day and there is a warm sunshine that rises from one of it’s Northwest suburbs.
Craig Wisniewski lives in the Northwest suburbs, and that sunshine appears to be coming from his house. Craig has been married to his wife Jean for 42 years; they have a loving, tight-knit family, with 4 children and 4 grandchildren. Craig also has MDS (Myelodysplastic Syndrome), which he claims, “saved his life”.
Craig was diagnosed with MDS in February 2017. He was extremely exhausted, and had shortness of breath. His oncologist didn’t equate these symptoms to MDS and recommended a stress test. Two minutes into that test, they put an oxygen mask on Craig. His carotid artery was 90% blocked. He had to have surgery to clear his artery followed by quadruple bypass surgery. Family, friends, even doctors were surprised that he did not suffer a heart attack or a stroke.
Craig Wisniewski credits his MDS diagnosis with saving his life. In a weird twist of fate, without being diagnosed with MDS, he would not have met with his oncologist, who would not have recommended a stress test, and as a result, he would not have been operated on, twice, in order to save him from a stroke or a heart attack. He is truly grateful.
Now Craig needs a bone marrow transplant to cure his MDS. Based on his heart condition, it is imperative that he finds a 100% match. His three eligible siblings have been tested and none of them were a match. Sibling matches only occur in about 25% of bone marrow transplant cases. His doctor has indicated that finding a match will be extremely difficult due to his Hungarian, Polish and German ancestry. Ethnically diverse patients have a much harder time finding a matching donor within the bone marrow registry.
Craig is extremely aware that he may not find a matching donor, but he wants to use his experience and recent learning about bone marrow transplants to help other people. He wants to raise awareness of the importance of joining the registry and help other patients find their matches. Craig Wisniewski is on a mission. He is a ray of sunshine on a cold winter day in Chicago. Although he is facing one of the most devastating obstacles in his life, he wants to help other people.
Every year, 14,000 patients are diagnosed with cancers such as Leukemia and Lymphoma and can only be cured by a matching bone marrow donation. Be the Match is the largest registry of people willing to donate their bone marrow, and the Icla da Silva Foundation is the largest recruitment center for the Be the Match Registry. Icla da Silva specializes in working with patients who are ethnically diverse and may have a more difficult time finding a match.
You can join the registry, on Craig’s behalf, by using clicking here.
Craig Wisniewski is genuine. When he finished a round of chemo treatments in December, he was grateful just to be able to spend time with his loving family. He is warm, friendly and always joking to make people laugh and feel more comfortable. He sincerely wishes to help others find their match and dispel the myths about bone marrow donation, which prohibit people from registering to become donors and not answering the call if they are matched with a patient.
The process to become a potential donor is simple and more information is available here – 5 Steps of Bone Marrow Donation, but you need to take the first step and register.
The need for a bone marrow transplant happens for patients across all walks of life, regardless of age. More than 80% of newly diagnosed cases of MDS occur in people over the age of 60.
We are grateful for people like Craig and the sunshine that they bring to other people’s lives. Please help us find a match for Craig.
Save a life. Join Now.
Watch Craig’s story:
Tiffany Davis is a 31 year old woman from Miami Florida. She is smart, beautiful and strong. She is battling cancer for the second time in her life and she refuses to let it beat her. Tiffany is a Warrior.
At the age of 28, Tiffany found a small lump under her left arm. She had a family history with breast cancer, her grandmother died from it, but it was never really talked about. She noticed the lump during a self examination and was diagnosed in 2014. It was detected in early stage 2, and was diagnosed as an aggressive form of cancer, described as triple negative. She had chemo, a bilateral mastectomy, otherwise known as a preventive mastectomy, followed by radiation treatments. Since her cancer was ER+ (estrogen receptor positive), she was also put on hormonal therapy.
Tiffany is strong and she survived her first battle, but after two years as a survivor, during a routine check-up, her labs came back with abnormal red blood cells and a low platelet count. The oncologist sent her to a hematologist for more tests.
After a series of labs and a bone marrow biopsy, it was confirmed on July 31, 2017 that Tiffany had acute myeloid leukemia. This diagnosis was the result of receiving both chemo and radiation for her breast cancer. Tiffany’s best chance of survival is to receive a matching bone marrow transplant.
Tiffany remains strong. She is positive and faithful and she will not give up. She insists that the first cancer changed her. She has become more outspoken, and believes it is important to share her journey and bring more awareness to it. She believes in her strength.
At 31 years of age, Tiffany is undergoing chemotherapy again. She has completed phase 1, induction chemo, which consists of 24 hour/day chemo treatment for 7 days. The process clears the bone marrow of leukemia cells, but dramatically affects the immune system and requires a 28 day stay in the hospital.
Phase 2 is the consolidation process, where they try to keep you in remission, through continued chemotherapy, until a matching donor can be found.
African Americans have a high propensity to be diagnosed with cancer. About 1 in 2 black men, and 1 in 3 black women will be diagnosed with cancer in their lifetime. Many of these cancers can be cured with a bone marrow transplant. Since African Americans have a greater genetic diversity than other populations around the world, this diversity can make finding a perfect match more difficult. This is further impacted by the fact that the African American community is simply underrepresented in the national bone marrow registry.
We encourage you to join the registry and stay committed to helping save the life of a patient in need. You could be the life saving difference. Please register using the TiffStrong referral code at Be The Match.
As a warrior, Tiffany Davis refuses to give up hope. She is thankful for the support of her family and friends and she is grateful to be able to share her journey with others. She has been documenting her thoughts and findings through her Youtube channel:
You can help Tiffany and many other patients looking for a matching transplant by hosting a marrow drive of your own at your company/school/church. Every drive helps us add more donors to the registry, please click here to request more info: https://icla.org/events/host-marrow-drive/
We stand strong with Tiffany and will do everything that we can to help her survive this next battle.
We Remember the Tate Family
Last month was National Sickle Cell Awareness Month. In recognition, we remember the courageous Tate family from Maple grove Minnesota.
The first two daughters of Yalonda and Gary Tate both had sickle cell anemia. The life threatening disease meant bi-weekly trips to the hospital for blood transfusions and follow up visits for both girls. People with sickle cell disease have abnormal hemoglobin in their red blood cells. Hemoglobin is a protein that carries oxygen throughout the body. When the cells are irregularly shaped, like sickles or crescent moons, the cells can get stuck and are not able to carry adequate oxygen throughout the body. Sickle cell disease is most common among people of African descent. The only cure is a matching bone marrow transplant.
Madison, the oldest daughter (now 23), had a bone marrow transplant in 2004, which failed. The doctors told the Tates that a sibling bone marrow match was their best hope. Since their daughter Olivia was also sick, she was not an option for a transplant.
The Tates decided to have another baby. They went through in vitro fertilization, testing Yolanda’s eggs until they found one free of the sickle cell trait. In November of 2005, the Tates gave birth to their 3rd daughter, Quinnlyn. At the age of six months, Quinnlyn gave her oldest sister Madison a gift of life. Stored stem cells from her umbilical cord were used in a transplant, giving life to her older sister.
Olivia (now 19) was also in need of a matching bone marrow transplant. Fortunately, a 100% match was found. The donor, Sidnei Barbosa, had registered to become a donor through the Icla da Silva Foundation. The foundation is the largest recruitment center for the Be The Match registry, focusing almost exclusively on patients with a racially diverse background.
Joining the registry, especially for people from minority communities, is important. Olivia Tate was extremely fortunate to find a match to her blood type, but there just aren’t enough potential donors of African decent on the registry. The African American community is underrepresented, which makes it more difficult to find a matching donor. You can register here and help save a life.
Four years ago, Olivia met her donor for the first time at the Icla da Silva Foundations Hope Gala in New York City. You can view the heart-warming story here:
The Icla da Silva Foundation is holding their 25th Anniversary Hope Gala on October 18, 2017. At the Gala, there will be another special meeting between a patient and her donor. You can donate here to help us continue our mission of saving lives by recruiting bone marrow donors and supporting patients and their families with diseases treatable by marrow transplants.