Removing barriers so a little girl can receive her life-saving treatment.
Valery Hernandez is a 9-year-old girl from the Dominican Republic. She was diagnosed with acute lymphoblastic leukemia in 2019. After two years of chemotherapy at the Instituto de Oncologia in the Dominican Republic, her cancer finally went into remission.
But the leukemia was so aggressive that it returned after only five months.
While a bone marrow transplant was her only option, the hospital in DR does not perform pediatric bone marrow transplants.
The medical team there referred her to the Icla da Silva Foundation.
We helped identify a transplant center in the U.S., Nemours Children’s Health, for her bone marrow transplant. After reviewing her case, a study for CAR T-cell therapy was identified at the National Institute of Health (NIH).
A team of doctors were interested in Valery’s case for a clinical trial.
What is CAR T-Cell Therapy?
CAR T-cell therapy is a treatment in which a patient’s T cells (a type of immune system cell) are changed in the laboratory so they attack cancer cells. T cells are taken from a patient’s blood. The gene for a special receptor, which binds to a specific protein on the patient’s cancer cells, is added to the T cells in the laboratory. This receptor is called a chimeric antigen receptor (CAR). A large number of these CAR T-cells are grown in the laboratory and given to the patient by infusion.
CAR T-cell therapies, and other antibody-based therapies, are used to target surface proteins found on leukemia cells. The goal is to improve outcomes for patients with blood cancers that do not respond to chemotherapy.
The family cried with joy after learning about the clinical trial.
CAR T-cell therapy, followed by a bone marrow transplant, was the best opportunity for long-term survival.
There were many barriers we helped remove in order to give Valery her chance at survival:
- Identify a Transplant Center in the U.S. for her bone marrow transplant
- Petition to get her accepted for the clinical trial at NIH in Bethesda, MD
- Support her application for a temporary humanitarian visa
- Arrange accommodations at NIH
- Arrange travel for the donor to transplant her blood stem cells
The first phase of the treatment, the CAR T-Cell therapy, was a success.
The Next Phase
Valery is doing great! She has been transferred to Nemours Children’s Health for her bone marrow transplant, which will happen in a few weeks.
The Foundation assisted with the arrival of her donor, Valery’s younger sister.
She is a perfect match.
We have been in constant contact with the family and continue to support them with logistical and emotional needs on their journey to a cure.
We are grateful for the amazing medical teams that are caring for Valery and her family.
Please consider making a donation and help us remove barriers for more patients like Valery.
MAKE A DONATION
Written by: Bret ItskowitchTaking On a Life-Threatening Journey with Confidence
How A Single Mother Keeps Hope Alive
Samuel is an 11-year-old boy from Astoria, in Queens, New York. He loves to read and play video games.
Since birth, Samuel has lived with a low platelet count.
Low platelets are caused by a genetic mutation. A low count is less than 150,000 platelets per microliter. Sammy’s count has usually been around 90,000.
In April 2020, Sammy was tired and suffered from a fever. His mom Alessandra was nervous. She was concerned about covid, so she brought him to the hospital. They diagnosed strep throat and prescribed antibiotics. She thought that was a good thing.
But he didn’t get better.
His pediatrician diagnosed mononucleosis and prescribed another antibiotic. It didn’t help.
Sammy’s platelet count had gone down to 25,000.
A Mothers Healthcare Journey Begins
Alessandra took Sammy to five different hospitals in New York City, Washington DC, and Boston. They were all large and well respected. She even called her personal doctor in Brazil.
They continued to discover abnormalities in his blood, but the findings were not conclusive. Bone marrow failure was suggested as the diagnosis.
Alessandra wasn’t sure what her next step should be.
She is a strong, intelligent, and confident woman. A single mother to two boys. She would not give up. She kept asking for more information, another opinion.
The doctors have recommended a bone marrow transplant.
Searching for a Donor
Alessandra’s next step is to find a matching donor for her son. Since both she and her older son have the recessive gene, they cannot donate their blood stem cells.
The doctors have searched the national registry, but there is no match for Sammy.
Because of his Brazilian heritage, the chances of finding a matching donor are low. There are simply fewer registered donors who would potentially match Samuel.
The Icla da Silva Foundation
Alessandra remembered the Icla da Silva Foundation as an organization that helps to remove barriers for patients who need a bone marrow or cord blood transplant. She learned about the foundation many years ago when a representative spoke at her church in Queens.
Alessandra contacted Airam at the Foundation. He listened to her story, understood her challenges, and answered her questions. He recommended some strategies to add potential donors and introduced her to the team at Be the Match.
We helped remove the initial barriers that every patient goes through, by providing information about the process, and orientation towards a life-saving solution. The goal is to explain the challenges while reinvigorating hope.
Their search for a matching donor began over the July 4th weekend.
Alessandra is very hopeful, “tell me what you need me to do. Should I post on social media, meet with the local press, talk to community leaders?”
We answered her with, “yes, yes, and definitely yes.”
Our mission is to remove barriers to treatment for patients who require a life-saving bone marrow transplant. We are helping Alessandra and her son with their search for a potential donor.
We are spreading the word and hoping a match will be found soon. A volunteer group is being formed through the Icla da Silva Foundation to expand support for Alessandra and Sammy in their search for a donor.
How is Samuel?
Last week, Sammy’s platelet count was 14,000. He is tired, and he has difficulty going up a flight of stairs. He bruises easily. Alessandra tells us, “it’s obvious when his platelets get low, he gets petechiae.” These are red marks on his body, which means he is bleeding into his skin.
Alessandra remains strong, “we will get through this, we will find a solution.”
To JOIN THE REGISTRY you need to be between the ages of 18-40, in good health, and willing to donate to any patient in need. Click the link below or text: Swab4Sammy to: 61474 and request a swab kit be mailed to your home.
If you have already joined the registry and want to help firther, please click the Volunteer button below and register to join our Zoom call.
JOIN the registry
volunteer for sammy
Together we will save more lives.
Written by: Bret ItskowitchHelping a Patient’s Mom Fulfill an Urgent Need
The Icla da Silva Foundation removes barriers to treatment for bone marrow patients. Some of these barriers may seem less consequential, but to the mother of a patient with blood cancer, any support can make a world of difference.
We were recently introduced to Josephine and her 13-year-old son Nathaniel by a social worker at the Children’s Hospital at Montefiore. Nathaniel was diagnosed with acute lymphocytic leukemia (ALL), a cancer of the blood and bone marrow. His only cure was a matching bine marrow transplant.
Fortunately for Nathaniel, his little brother was identified as a matching donor and he is receiving a transplant.
But his mother Josephine had another barrier. As a single mom with two children, she needed to afford someone to watch her younger child so she could be with Nathaniel during his treatment after the transplant.
She couldn’t be in two places at once. This was her barrier.
The IclaCares program was able to help a mother fulfill an urgent need. We were able to remove her barrier in less than a week.
Our support enabled Josephine to place one of her challenges on the back burner, so she could focus on her son while he received his bone marrow transplant and treatment.
We were able to help Josephine and her family thanks to the support of our donors.
Please consider making a donation to help us support more patient families with urgent needs. Even a small donation can remove a barrier that isn’t often considered.
The Icla da Silva Foundation appreciates your support. We know patients like Josephine are extremely grateful.
MAKE A DONATION
Written by: Bret ItskowitchCOVID-19 Will Not Stop Us From Saving Lives!
Social distancing has changed the way we react with one another. This pandemic certainly has affected how we save lives. But it will not stop us!
Patients are relying on us in their search for a cure.
The Icla da Silva Foundation is a non-profit with a simple mission. We save lives by recruiting stem cell donors. The more donors we add to the national registry, the greater the likelihood of finding a cure for a searching patient.
A stem cell donor is the only cure to life-threatening diseases like leukemia, lymphoma, and sickle cell.
We used to recruit potential donors by visiting universities, schools, and churches across the country. We held ‘recruitment drives’ where we would explain the needs and challenges to a larger audience. We would set up a table in high traffic areas and invite people to include themselves on the registry. We asked them to be a cure for a patient in need of a transplant.
These public drives are no longer happening. And while no one is sure about the future of social distancing for safety, we cannot afford to ‘wait and see’.
Blood cancer and sickle cell will not wait. A patient searching for their life-saving donor cannot wait to see what happens. Their life depends on finding a matching donor.
So we continue our mission. We are using every platform to spread the word and we continue to register more life-savers.
We post more often on social media, sharing patient stories.
We have been engaging student groups in Zoom meetings, sharing information, and presenting the challenge to those who are willing to listen.
As it turns out, people are listening. They are joining the registry. Many are willing to save a life…but it can be painstakingly slow.
Still, we move forward. Patients and their families are counting on us.
Do you have any ideas to help us reach more people? Do you know someone willing to save a life by adding themselves to the Be The Match registry?
Maybe you have a Facebook group where we could share patient stories? Perhaps you have a Zoom meeting that we could join to present a 10-minute life-saving challenge?
Please send me an email, I would love to learn more and I welcome the invites. You can help us save more lives in this socially distant world.
You can reach me via email here: firstname.lastname@example.org
Thanks for reading. Together we will save more lives.
join the registry today
Written by: Bret ItskowitchShe Battled Cancer, and Almost Didn’t Make It
Watch a Cancer Patient Finally Meet her Guardian Angel, the Girl Who Donated her Bone Marrow
Every year, the Icla da Silva Foundation hosts our Hope Gala in NYC. The highlight of the evening is the first time meeting between a patient and their life-saving bone marrow donor. The meeting happens on stage, in front of many supporters, most of whom are crying as the patient and donor share their story.
You can read about the Hope Gala here, but this tells the story of one of those patients…and their matching donor.
The Patient – Stephanie Cisne
When Stephanie was a freshman in college, she fainted for no apparent reason. Her friends got her up and took her to the ER. The doctors checked that she didn’t have a concussion, and said that she was just malnourished.
Over the next few weeks, Stephanie continued to feel weak. She came close to fainting a few more times, so she went in for a check-up.
After reviewing her bloodwork, the doctor sent her to a cancer specialist.
On March 10, 2014, Stephanie was diagnosed with AML (acute myeloid leukemia), with an FLT 3 mutation. The cancer was very aggressive. She was hospitalized immediately.
An FLT 3 mutation meant that her body was actually encouraging the growth of the leukemia cells.
The oncologist said that she would need a bone marrow transplant, as soon as possible, in order to survive.
Her family began working with the Icla da Silva Foundation and we immediately started organizing marrow drives.
Fortunately, a matching donor was identified very quickly. On August 6, 2014, Stephanie received her bone marrow transplant.
She Almost Didn’t Make It
But her journey wasn’t over. Many complications followed the transplant.
She battled serious infections and septic shock. One leg was on the verge of amputation. Stephanie had developed a life-threatening liver disease, followed by kidney failure.
Then her body went into a coma. They weren’t sure she would wake up. The doctors gave her 72 hours.
Small Actions – Big Results
Fortunately, Stephanie is a survivor. She took her battles head-on and never showed fear. She is now cancer-free, thanks to her doctors…and her life-saving bone marrow donor.
When we asked her what she would tell people who were considering joining the registry, she reminded us that “small actions can have big results”.
Stephanie explained to us, “That small gesture of swabbing your cheek, to see if you are a match for someone, will literally change your life. When you go through a donation, when you utilize the power you have to save a life, you gain a connection with a complete stranger. You will have made a difference in someone else’s life. You would touch an entire family.”
“You will give the gift of life to a long list of friends and relatives that you never even knew existed.”
The Donor – Crystal Dozier
Crystal was on the other side of the country when she joined the registry in 2007. There was a blood drive at her school and representatives from Be The Match were at that blood drive to sign people up for the registry.
Crystal came to donate blood and she was inspired by another opportunity to help people, so she joined the registry.
In the summer of 2014, while at lunch with her mother and sister, she received the call that she matched a patient in need. Crystal agreed to donate her bone marrow.
What Was the Donation Process Like?
Crystal explains that she did a lot of health-related interviews over the phone, followed by a number of blood tests and screens. In addition to checking that she was the perfect match for a patient, they also wanted to ensure that her health would not be subject to any challenges.
Crystal told us, “The actual donation was over before I knew it…literally. They knock you out for it. And the recovery wasn’t too bad. Everyone involved was so nice and helpful; they made all my appointments, took care of all the paperwork and financials, all I had to do was show up. The whole thing was relatively painless.”
5 years after the transplant, Stephanie and Crystal had the opportunity to meet for the first time. It happened on stage, in NYC, at the Icla da Silva Hope Gala.
In a ballroom filled with 300 onlookers, Stephanie and Crystal met face-to-face. They didn’t know each other…now they are sisters. You can watch the video below.
Not everyone who joins the registry ends up matching a patient and saving a life, but you have to take that first step and include yourself.
Please consider joining the registry in honor of Stephanie and her donor Crystal.
join the registry
This story ends with a quote from Crystal to Stephanie…”I know the past few years haven’t been easy but you’ve traveled through them with immeasurable dignity and grace. I am so incredibly proud of you and honored to meet you. And just because the donation is over doesn’t mean my involvement in your fight is over. We’re in this together.”
Please consider joining the registry. As Crystal says, “we’re in this together.”
Written by Bret Itskowitch
A Little Girl From Miami is Saved by a Stranger from New York
Watch an 8-Year-Old Girl with a Life-Threatening Disease Meet Her Life-Saving Bone Marrow Donor
It was a once in a lifetime meeting…and it happened on stage, in front of a crowd of 300 tearful witnesses at the Icla da Silva Foundations annual Hope Gala.
The Gala is an end-of-year fundraiser, celebrating achievements and thanking supporters. You can read about it here.
The highlight of that evening was the face-to-face, first time meeting between a patient and their life-saving bone marrow donor.
The Patient – Giliani Lacayo
8-year-old Giliani Lacayo was the patient. She was brought to the stage by her mom Diomaris. Giliani was diagnosed with Kostman’s syndrome, a rare disorder of the bone marrow. Children born with this condition lack the white blood cells that are important in fighting infection.
The doctors told Giliani’s mom that her only cure was a matching bone marrow transplant.
In February of 2015, at the age of 4, Giliani received a cord blood transplant. But unfortunately, one month later, the family was told that the transplant did not take.
As you might expect, Giliani’s mom was upset. She was fearful and very concerned. They had gone through this devastating process…months of hospitalization, four times with pneumonia, intense antibiotic treatments, daily injections of white blood cell boosters…and in the end, they had gotten nowhere.
Her 4-year-old little girl was not yet saved.
The doctors began the search for a matching bone marrow donor on the national registry. There are more than 20 million potential donors listed on the registry, but it’s all about the match. When a patient and donor share the same ethnicity, when they match, the chance for a successful transplant is much higher.
The search for a donor is more difficult for patients like Giliani, who are ethnically diverse. While White patients have a 77% chance of finding a matching donor, the chance of finding one for a Latino patient is only 46%; it’s even lower for African American patients.
Fortunately for Giliani, and despite her Hispanic origin, a match was found. Her name was Marta Sanchez, and she said yes when she received the call, asking her to donate her bone marrow.
The Donor – Marta Sanchez
Marta remembers joining the registry at a drive run by the Icla da Silva Foundation. It was at the Dominican Embassy in NYC. She insists that joining the registry was no big deal. When she learned that she may be the cure for someone like her, she was happy to add her name and information.
Seven years later, she received a call that she was a match for a patient.
Two days before Christmas, in 2015, Marta went to the hospital and donated her bone marrow.
At the time, she was going through some very difficult personal challenges. She had also received a lot of negative reactions from friends who declared it was dangerous and painful.
Marta insists that it was not dangerous or painful. She knew in her heart that it was something she had to do. Someone was counting on her.
Despite all that she was going through, even though she was concerned about not having enough to gift her beautiful daughters on Christmas, she knew that giving the gift of life to a complete stranger would be a blessing from God.
On Christmas Eve in 2015, little Giliani Lucayo received her life-saving bone marrow transplant from Marta Sanchez.
To watch Giliani’s mother express her gratitude for Marta’s selfless act was heart-wrenching. They embraced on stage for the longest time and it was a beautiful thing to witness.
We were fortunate to watch the story unfold on stage.
A young girl suffering from a rare disease. A mother struggling to understand what will happen next. And a selfless woman, navigating her own challenges, who took the steps to unanimously give life to an unknown person.
There wasn’t a dry eye in the house. You can watch them meet in the short video below. At 2:55 little Giliani thanks Marta for saving her life.
You Can Play A Role
Giliani’s mom Diomaris, gave us her reaction to Marta’s life-saving bone marrow donation for her little girl, “There are no words for what she did. I’m thankful for her every day. I pray for her and her family every day. My whole life I will be thankful for her, she is part of our lives, she is part of our family. “
You could save another person’s life. You may be able to give joy to an entire family by donating your stem cells or bone marrow to a patient who doesn’t have a match in their family. Please add yourself to the Be The Match registry by clicking the link below. You will receive a swab kit in the mail. As soon as you return the kit, your name will be included in searches for matching donors.
Be like Marta. Do it for patients like Giliani.
join the registry
Thanks for reading.
Written by Bret ItskowitchHow You Can Help Save This Little Boy’s Life – Modern Wellness Guide
Alfredo Diaz is suffering from an extremely rare disease. A blood stem cell transplant, from a genetically matched donor is his only hope for a cure.
His mom, Natalia Torres, is confident that a matching donor will be found. “There’s one out there, we just have to find him or her.”
We are searching for Alfredo and his family…you can help us by joining the registry and sharing Alfredo’s story.
join for alfredo
read his storyCalle Ocho Music Festival – Not Giving Up
At 6 AM on Sunday, March 10, representatives from the Icla da Silva Foundation were at the Calle Ocho Music Festival in Miami, Florida.
For the team members who attended, it had nothing to do with music. It was all about supporting the family of Julian Morales, with the hope of finding a matching stem cell donor in order to save his life.
It was about Saving Julian.
Fighting For His Life
It was about setting up tables and organizing volunteers so that more people understood the need to join the Be The Match bone marrow registry. It was about eliminating the fear of joining and explaining the fact that only 7% of people on the registry are Hispanic. This is why patients with a Hispanic or Latino background have a more difficult time finding a match. There aren’t enough potential donors on the registry.
Being at Calle Ocho was about doing everything we can to give Julian a 2nd chance at life.
It was about adding more potential life-savers to the registry.
Watch Julian and his Mom on NBC Miami
Not Giving Up
Julian suffers from a rare, life-threatening blood disorder called Dyskeratosis Congenita and bone marrow failure. He has been suffering for 4 years. Since there is no match in Julian’s family, they need to find a donor who is not related. They have been searching for a match for 4 years. There is still no match for him on the Be The Match registry.
As you would expect, Julian’s mother Mayra is desperate to save her son’s life. She is pleading for help from the Hispanic community, “…it’s a matter of life and death.”
For the Icla da Silva Foundation, this past Sunday was about not giving up. We can listen to music later.
Right now we need to find a matching donor for Julian.
You can join the registry by clicking the link. You will receive a kit in the mail which is used to swab the inside of your cheek. When you return that kit to Be The Match, they will test your HLA type to see if you are a potential match.
You or someone you know may be a match for Julian. Please join and share with others.
JOIN THE REGISTRY
What Is It Like To Give To A Stranger? – A Bone Marrow Transplant Story
Have you ever given to a complete stranger?
to Give [giv] verb: to freely transfer possession of something to someone: to hand over, without expecting compensation
Michael Powell is a “giver.” He regularly donated blood. He also donated his bone marrow. Twice. Once with a stem cell transplant, and again through a bone marrow transplant. He gave, not knowing where, or to whom it was going. He is a giver.
In 2007, while at a company blood drive in NYC, he met some folks from the Icla da Silva Foundation. They were asking people to consider joining the Be The Match bone marrow registry. Most blood cancer patients, people with varying forms of leukemia, lymphoma, or sickle cell, don’t have a matching donor in their family. They require a transplant from a stranger in order to survive. Their doctors search the Be The Match registry, looking for a matching donor.
On the day in 2007, after he finished donating blood, Michael joined the bone marrow registry. He filled out some forms, swabbed his cheek, and was entered onto the registry. It was that simple. The process is now digital, and they mail the swabs to your home, but anyone between the age of 18 and 44 can join.
Michael agreed to donate his stem cells or bone marrow, should the need ever arise.
Matching and the Challenge
Unfortunately, that need arises every day. Approximately 14,000 times every year. The challenge is in finding the perfect “match” for those patients in need of a transplant.
Only one out of every 406 people on the registry will match and donate. A match is usually determined by a person’s ethnic ancestry. An African American patient is most likely to receive a successful transplant, a perfect match, from an African American donor. Michael wasn’t aware of it at the time, but African American donors are in short supply. For the African American patients with a blood cancer or sickle cell, only 23% are able to find a match on the current registry. By comparison, Caucasians are able to find a successful match 77% of the time.
There simply aren’t enough potential donors included on the registry, especially donors of ethnic diversity. The Icla da Silva Foundation is doing its best to change that by specifically holding registration drives within diverse communities.
You can join the registry by clicking the link. You may match a patient in need.
join the registry
Michael’s First Bone Marrow Donation
In 2013, six years after joining the registry, Michael received a call that he was a match. He had forgotten that he was even on the registry. Be The Match explained the process and asked if he would be willing to donate his stem cells through a PBSC donation.
They scheduled a check-up, to make sure he was physically fit, and organized some tests to ensure he was a perfect match. The donation process includes injections of filgrastim, which helps increase the number of blood-forming cells in the body. Be The Match organized a visiting nurse, who came by his apartment daily, for the filgrastim shots.
Five days later, he donated at Memorial Sloan Kettering hospital in NYC. It took about 4 hours. His blood was removed through an intravenous needle in one arm, passed through a machine that collected the blood-forming cells, and the remaining blood was returned to his body through a needle in the other arm.
Michael told me that Be The Match took care of everything. They offered to have someone go with him to the hospital. They organized a car to pick him up and take him back home. They even paid for a meal for him and a friend after his donation.
He insists the process was easy and pain-free. He had some joint stiffness for a few days, but he would recommend that everyone join and donate if they are offered the opportunity.
The next step was waiting to hear if it was successful for the patient.
Unfortunately, shortly after the transplant, due to complications from their cancer, the patient passed away. Michael was greatly affected by that news. He says “it meant so much for me to give, but to learn that the patient passed away, that was very heavy on my heart.”
Michael’s Second Donation
In 2017, he received a second call. He was a possible match for another patient.
Again, Be The Match kept in close communication and organized everything for him. They scheduled physical exams and blood tests.
While waiting to see if Michael was the best match, the patient had complications and the doctor indicated that this time, a surgical marrow extraction was the preferred method.
Michael had never stayed in a hospital before, and he had never had surgery.
Still, he agreed that he would donate.
When I asked him why he shrugged and said to me “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.”
They scheduled surgery for June at Memorial Sloan Kettering, where they would extract bone marrow from his pelvic bone. He was anxious. Understandable so.
Michael tells me that the nurses and doctors at the hospital were all incredible. Answering all of his questions and making sure he was comfortable with his decision to donate his bone marrow. Right up to the very last minute, the doctor and anesthesiologist asked him if he was still comfortable going through it.
Once again, Michael said yes.
On June 1, 2017, at Memorial Sloan Kettering hospital in New York City, Michael donated his bone marrow through a surgical procedure. On June 2, a sickle cell patient received Michael’s bone marrow in a transplant at Nationwide Children’s Hospital in Columbus Ohio.
Always positive, Michael remarked that during the surgery, it was the best sleep he had ever had. He was emotionally relieved that it was over; physically, he was stiff.
Again, I kept pushing Michael about the why. I think he grew tired of me asking. His response was direct and to the point – “I didn’t think of why, I thought of how, and when do you need me. I knew I wasn’t going to be harmed from it.”
I still find his perspective to be remarkable. Michael believes that we are all connected. It is very important to him. He tells me that “we all have a chance to make a difference in someone’s life.” While that is very true, unfortunately, many people do not act on it.
Michael Powell did, and he made a difference in someone’s life. We are forever grateful.
After a transplant in the United States, the donor and recipient are not allowed to meet for at least a year. On October 17, 2018, 16 months after the bone marrow transplant, Michael was invited to the annual Icla da Silva Hope Gala. It was at the Gala that he met his patient, Aunesti Sullivan.
Every year at the Gala, we introduce patients and their donors to each other on the stage. It was the first time that Michael and Aunesti met. It was an emotional experience for everyone in the room.
Aunesti is a 13-year-old girl from Toledo, Ohio. She was born with Sickle Cell Anemia, and as a result of the Sickle Cell, was also suffering from Avascular Necrosis (AVN), or brittle bone disease.
Aunesti is doing very well. She is active, back in school, and living the life of a teenager.
Michael is happy to have made a difference in her life. He tells me they keep in constant contact via text and phone. He has agreed to work with us to help spread the word about the importance of joining the registry and staying committed to donate if you ever match a patient In need.
Anyone between the ages of 18 and 44 can join by clicking the link below.
join the registry
Thanks for reading, and thank you to Michael for making a difference in someone’s life. We are all connected.
Written by Bret ItskowitchA Time for Feeling Both Thankful and Grateful
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 Match registry. 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 18-40 can join the registry and become a potential donor for a patient in need. Please join.
join the registry
Watch below for a recap of their meeting at the 26th Icla da Silva Hope Gala on October 17, 2018:
Written by: Bret Itskowitch