On October 17, 2018, Aunesti Sullivan and her extended family met Michael Powell, the man who saved her life.
Aunesti, a 13 year old girl from Toledo, Ohio, was born with sickle cell anemia. At the age of 10, as a result of the sickle cell, she developed Avascular Necrosis (AVN), also known as brittle bone disease.
Needless to say, Aunesti’s young life has been filled with treatments, transfusions, and extended hospital stays.
Her doctors recommended a bone marrow transplant to cure her disease, and she was fortunate to find a 100% matching donor through the Be The Matchregistry. That Donor is Michael Powell, and he joined the registry through a donor drive run by the Icla da Silva Foundation.
Michael donated his bone marrow through a surgical procedure on June 1, 2017 at Memorial Sloan Kettering in New York City. On June 2, Aunesti received a bone marrow transplant at Nationwide Children’s Hospital in Columbus Ohio.
One year following the transplant, and Aunesti is doing very well. She is active, back in school, and living the life of a teenager. This past October, at the annual Icla da Silva Hope Gala in New York City, Aunesti and Michael met for the first time.
“He’s given me a quality of life, he’s given me the opportunity to be a teenager, and live life to the fullest.” – Aunesti Sullivan
“Someone needed help and it was an opportunity for me to help that person…I couldn’t think of a reason not to do it.” – Michael Powell
As we begin the coming holiday season, we are both thankful and grateful. One person gave and another received, and both are better as a result.
Anyone between the age of 18-44 can join the registry and become a potential donor for a patient in need. Please join.
Watch below for a recap of their meeting at the 26th Icla da Silva Hope Gala on October 17, 2018:
Written by: Bret Itskowitch
Jefferson Donated His Bone Marrow 10 years Ago
Jefferson Araujo donated his bone marrow 10 years ago. He joined the registry through an Icla da Silva bone marrow drive in Boston, and after he donated, he met his recipient at the Icla da Silva Hope Gala in NYC.
He still supports the foundation by showing up at our events and sharing his story.
Jeffersen gave someone’s life back. He insists “you can’t explain it…it’s a marvelous feeling.” He says he would do it again, 10,000 times. We are grateful he did it once. Thank you Jeffersen, you are truly appreciated.
Rachell Souza was born with severe aplastic anemia. Her only chance to survive was a bone marrow transplant. Her family looked for a compatible donor for five years. Their search finished when Jefferson joined the Be The Match registry in Boston, at one of the Icla da Silva Foundation marrow drives.
Since both Jefferson and Rachell have Brazilian ancestry, Jeffersen was a match for Rachell.
Rachel and Jefferson met in NYC for the first time during our Hope Gala event in 2009. She is now 18, they still keep in touch.
You can make a difference in someone’s life. You could be someones match.
The human spirit is alive. People are surprisingly positive and giving, kind and generous…I witnessed it first hand last weekend. Hope was everywhere.
Saturday, April 14th was the 2nd annual Mix and Match luncheon sponsored by the Icla da Silva Foundation. Despite the inherent challenges and dire consequences of people dealing with various forms of blood cancers, the room was filled with smiles and hope.
Family members stood and talked about their involvement with Icla da Silva. They shared stories about the loss of loved ones due to leukemia and MDS, but they still maintained focus on the importance of spreading the word about bone marrow donation and doing everything they could to help others, in the name of their father, son, daughter, husband, sister, wife, cousin and friend.
Donors talked about receiving the call that they were a match and feeling blessed by the opportunity to give life to someone through a bone marrow donation. Often, the process is not much more cumbersome than giving plasma, and they described the chance to donate their bone marrow as a privilege, as something they did not think twice about, as a way to save a person’s life.
Survivors shared information about their journeys, the diagnosis, the chemotherapy, the loving support from friends and family. They talked about working with Icla da Silva and Be the Match on the search for a matching donor, and they smiled about the outcome of a successful transplant.
And then there were the patients, some just beginning their journey, others surviving for longer than expected…all hoping that a matching donor could be found.
Icla da Silva Mix & Match luncheon, April 14, 2018
Some matches are harder to find. Be the Match has is the largest and most diverse bone marrow registry in the world, but it is still not big enough, or diverse enough. The Icla da Silva Foundation focuses on increasing both the size and diversity of the registry. We work to recruit potential donors from all ethnic segments in the hope that more patients will be able to find the match that they need.
You can help us save more lives by completing any combination of the following three actions:
Join the registry and add hope to the many patients looking for a matching donor. Please click the link Join the Registry.
If you have the ability to connect and communicate with a group or community organization, we can work with you to schedule a Bone Marrow Drive hosted by you or your group; please enter your information using this link Host a Drive, and someone from the Icla da Silva Foundation will contact you. It only requires a small investment of time, and the promise to gather an interested crowd.
The other way to provide support is financially. Even small donations help us to recruit more donors and provide support services to patients in need. We are a 501 (c)(3) and all donations are tax deductible. You can donate using this link Donate Funds.
Please help us continue to keep hope alive.
Renata Has Faith
Renata Coimbra is full of life. She is always smiling and spreads joy wherever she goes. She is very close with her family and friends, she worries about those less fortunate, and she regularly contributes to her church and her community. She is recently married, a positive role model, and faithfully leads others in prayer.
Renata was recently diagnosed with leukemia and is in desperate need of a bone marrow donor. She has begun an aggressive treatment of chemotherapy and she knows that she has a long and difficult path ahead, but she has faith that she will find a matching donor.
In 2001, she moved from Espirito Santo in southern Brazil, to Boston, Massachusetts, where she worked as a house manager and loving nanny for 13 years. Missing the tropical climate of her childhood, Renata moved to Florida in 2014, where she met and married her love, Danilo. Together, they enjoy music and movies, regularly attend church, and spend time with Danilo’s family, who has accepted her as their own.
Late last year, Renata was suffering from shortness of breath. After multiple visits with doctors and specialists, she was unexpectedly diagnosed with a lymphoma that had formed in her chest and attacked the bone marrow. It quickly developed into leukemia. She has been told that even with chemo treatments to fight the cancer in her blood, a bone marrow transplant will be necessary to ensure her survival. After multiple treatments and two hospitalizations in the short timespan since she has been diagnosed, she has been forced to quit her job and live a remarkably different lifestyle.
Before she got sick, Renata and Danilo enjoyed dancing and going to the beach on weekends. Although she misses work and her Zumba class, she has never lost faith that she will overcome this disease.
Renata’s faith is overwhelming. Early in the search, they found three matching donors. Unfortunately, none of them were ready to make the commitment to donate. Renata insists that she has the support of God, friends and family, and a matching donor will come through.
While we certainly hope that everyone who registers is able to stay committed if they ever receive the call, it is important to recognize that the vast majority of bone marrow patients require a non-surgical process called peripheral blood stem cell donation (PBSC).
A PBSC bone marrow transplant requires a donor to take injections of filgrastim over the course of 5 days, which increases the number of blood forming cells in your blood stream. On the day of donation, your blood is removed through a needle in one arm, passed into a machine that separates the blood forming cells that your body has produced, and then your blood is returned back into your body through the other arm.
The process is relatively simple.
Please consider registering to become a potential bone marrow donor for Renata and the many other patients who are looking for a match.
We share Renata’s faith that more people will register and stay committed.
We ask you to share Renata’s faith that more people will register and stay committed. Share her story:
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:
WHAT IS IT REALLY LIKE TO DONATE BONE MARROW
Read as a contributor to the Huffington Post goes through the process of donating his bone marrow:
You might be the perfect match for someone. Please join the registry and save a life here: https://icla.org/join
Samantha Mitchell joined the Be the Match registry at a bone marrow drive held at the University of Wisconsin in Oshkosh, WI, where she was studying microbiology. Little did she know that she that her HLA type was a 100% match for a young boy living in Brazil with leukemia, a boy desperately in need of a bone marrow donation.
Samantha received a call from Be the Match about a month after she joined the registry. Following a blood test and a check-up, she drove the 85 miles to Madison, WI to make a peripheral blood stem cell (PBSC) donation. At the time, she had no idea that her stem cells would travel another 5,300 miles to Sao Paulo Brazil to save that young boy living with leukemia.
The process for a PBSC donation is similar to giving blood. For 5 days, the donor receives injections of filgrastim, which increases the number of blood-forming stem cells in the bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that will collect the blood-forming cells. The remaining blood is returned to you through a needle in the other arm.
Samantha says that although she was anxious about the procedure, she felt better knowing that she was directly helping someone.
After the young boy in Brazil received Samantha’s donated cells, his body had complications. He spent almost 2 years in the hospital and his doctors recommended an additional transplant of lymphocytes. Samantha agreed to a second donation without hesitation.
Samantha was finally able to meet the recipient of her cells, Tancrede Bouveret, and his entire family, at the Icla da Silva Foundation’s Hope Gala in New York City on October 18, 2017. You can read about Tancrede’s story here.
“While I already feel connected to them, words can’t express how excited to actually meet him and his family”
– Samantha Mitchell
Samantha’s Mitchell’s act of giving was selfless. The fact that she gave twice (a rare occurrence), makes her remarkable. We are grateful that she joined the registry and we are thankful that she had the commitment to save a life. Today Samantha continues to live her life, has graduated from university, and is now working at the same hospital where she donated bone marrow. Her story has come full circle.
You could be a life-saving match for a patient in need of a bone marrow transplant. Joining the Be the Match Registry is the first step to become a marrow donor. See our infographic below to learn about how you can sign up to becoming a bone marrow donor and the steps of the donation process.