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She 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 their 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 didnlt 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

 

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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.


The Meeting

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 Itskowitch

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The Reason We Do What We Do

Two Cancer Patients Meet Their Life-Saving Bone Marrow Donors


The Icla da Silva 27th Hope Gala occurred recently in NYC. It was a wonderful evening spent reconnecting with old friends and making new ones. The cocktail hour was a buzz with beautiful smiles and interesting conversations. While the cameras were flashing, cocktails were poured, the band played lite jazz and delicious hors d’oeuvres hit just the right spot.

A silent auction was held during the cocktail reception in order to raise funds for the Foundation. Items were donated from near and far, including world-class dining from Per Se and restaurant Daniel, roundtrip airfare from JetBlue, select wines, designer jewelry, and a host of experiences from various spas, sports venues, and salons.

There are still a few items available. You can make a bid to win one of these items via this link.


The Main Event

Similar to years passed, the highlight of the evening was the first time meeting between a patient and their life-saving bone marrow donor.

U.S. Law maintains strict rules regarding the confidentiality of bone marrow patients and their donors. Both patient and donor must wait at least one year before they are asked if they consent to share their information. Hopefully, if they each say “yes”, they get the opportunity to meet face-to-face.

The Icla da Silva Foundation is fortunate to make these meetings happen every year.

But this year was different, this year we were able to showcase two patient/donor meetings.


Meeting #1: Giliani and Marta

We arranged a meeting between 8-year-old Giliani from Miami, who was diagnosed with Kostman’s disease, and her bone marrow donor, Marta Sanchez, from New York.

Marta had signed up to become a donor at a drive organized by the Icla da Silva Foundation many years ago. When she finally received a call that she matched a patient in need, she immediately said yes to the transplant.

Their first meeting was a heart-warming experience for everyone in the room. In the presence of nearly 300 people, among the glaring lights and flashing cameras, adorable Giliani came up to the stage with her mom…and met Marta, the complete stranger who saved her life.

You can read their story and watch a video of their emotional first-time meeting here.

As more people are added to the registry, the chances for a life-saving transplant increase. This year the Icla da Silva Foundation was able to share a second patient/donor meeting at our Hope Gala.


Meeting #2: Stephanie and Crystal

We also had the great fortune to present the first time meeting between Stephanie, a young woman from New Jersey who was diagnosed with AML (acute myeloid leukemia) and her life-saving donor Crystal Dozier from Arizona.

As a leukemia patient, Stephanie and her family had been working with the Icla da Silva Foundation during their search for a match. Stephanie had been to some of our events, and she came prepared with a speech…but she wasn’t prepared to hold back the tears…and neither could anyone else in the room.

Everyone watched as Stephanie and her donor Crystal hugged for the first time on stage. You could feel the intensity of that hug, and tears of joy were flowing at every table in the ballroom.

Read more about Stephanie’s battle for survival and watch the video of their first-time meeting via this link.


You Can Help Us Save More Lives

The Hope Gala was a heartwarming and unforgettable evening. But our Gala was more than just two first-time meetings between a patient and their donor, it was a celebration of 27 years of service, with more than half a million potential donors added to the registry.

The Gala was also in honor of the nearly 800 people who registered through Icla da Silva and saved lives by donating their bone marrow to matching patients.

We are grateful for those lifesavers. We also appreciate the many people who support our mission.

There are several ways that you can help us continue our mission of saving lives. The top 3 are as follows:

  1. Speak with us about hosting a drive through your connections with a university or employer. We are always looking for opportunities to reach people between the ages of 18-44 who may be interested in saving a life.
  2. You can volunteer at one of our events, or at some of our larger recruitment drives. We can always use a helping hand.
  3. Of course, you can also make a financial donation of any size. All donations are tax-deductible and are eligible to receive corporate matching from their employers. Ask your company if they match charitable contributions made by employees. Obviously, larger donations help us make strategic investments that further our vision.

Our vision is to ensure that every patient, regardless of ethnicity, has equal access to a matching stem cell donor. We also strive to give patients the support they need in order to receive their treatment.

You can also help by joining the registry. Click one of the links below. A swab kit will be mailed to your home. Once you return that kit, your name will be included in searches for life-saving donors.

Join the registry in honor of Giliani:

join the registry

Join the registry in honor of Stephanie:

join the registry

Thanks for reading. We hope to see you at future celebrations.

Written by Bret Itskowitch

 

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