REMOVING BARRIERS – AARON & RYAN’S STORY
(Updated: May 27, 2023)
Palm Beach Country, Florida
When we first learned about Marelyn and her two boys, they needed financial assistance. The twins, Aaron and Ryan, were both diagnosed with sickle cell disease and scheduled to receive a bone marrow transplant.
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The Icla da Silva Foundation supports patients on their journey to receive a bone marrow or cord blood transplant. For patients demonstrating financial need, we provide grants during treatment.
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But when we met, we discovered that this was their second transplant. The boys had already received a stem cell transplant from their mom last year. Due to complications, they needed another one.
It Was a Difficult Situation
As a single mom, Marelyn has been unable to work while acting as the caregiver for two 8-year-old boys with a blood disease. She has been without income for an extended period.
She was in a very difficult situation.
Marelyn was alone, afraid, and unsure of the outcome. With sickle cell disease, the boys have lived in pain for years. They had already been through treatment and transplant, and now they needed to do it all over again.
Watch Mom try to explain some of her challenges. It’s a very hard thing to ask for help.
We were happy to provide the family with a grant while the twins were in treatment. We helped with housing, transportation, and support for meals. But, Marelyn needed more.
She needed emotional support, someone to talk with who could understand her challenges. She needed a shoulder to lean on.
We have been speaking with Marelyn 2-3 times a week in the months before the boys’ second transplant. Days, evenings, and weekends; it didn’t matter. We wanted to help her get through this ordeal and understand that she is not alone.
At the very least, we wanted to provide her with hope.
The 2nd Bone Marrow Transplant Was a Success
The boys have received their second bone marrow transplant. Once again, their mom was the donor.
UPDATE: The boys are doing well and we received a quick update from their mother…look at them now!
We want Marelyn to have high hopes for their future.
Thanks for reading. You can support more patient families like Marelyn, Aaron, and Ryan with a donation. Even the smallest gift can make a huge impact on life during treatment.
Together, we will continue to make a difference for patients in need of a bone marrow transplant.
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Written by: Bret ItskowitchHope and Healing: A Mother’s Story of Her Son’s Sickle Cell Cure
REMOVING BARRIERS – NASIR’S STORY
For nineteen years, Nasir lived a life filled with pain and uncertainty due to sickle cell disease. His mother SueAnn, watched helplessly as her son endured countless complications, blood transfusions, and pain crises.
She vividly remembers the first time Nasir woke up screaming in pain. He was only two months old and his little hands were swollen to the size of a man’s hands.
When she called the doctor, he said Nasir was going through a pain crisis and he prescribed morphine. She remembered thinking, “morphine, for my two-month-old baby, why is this happening?”
That was their struggle for 19 years.
They never knew when the next crisis would strike, or how severe it would be. It was a life filled with pain, uncertainty, and fear. Just like any mother would, SueAnn felt helpless and defeated.
Finding a Cure
Then on one fateful day, everything changed.
They met a doctor who recommended a bone marrow transplant, using stem cells from Nasir’s own body.
SueAnn was hesitant at first, but the doctor explained the process and the expected outcome.
SueAnn described this doctor as “an Angel,” and she suddenly felt full of hope.
With renewed faith, she knew her son Nasir’s life was about to change.
An Autologous Bone Marrow Transplant
Using an autologous bone marrow transplant to treat sickle cell disease is relatively new. The process uses stem cells from your own body, so it doesn’t rely on a matching donor. But it comes with potential complications and challenges.
Nasir went through the treatment, and although it’s still early, his transplant was successful.
SueAnn felt like her sister Lisa, who had passed away from sickle cell disease one year ago, was watching over them and helping guide Nasir through his transplant.
Receiving Support from the Icla da Silva Foundation
As a single mother, SueAnn admits that the process was hard on them.
She could not work because she needed to be with her son during his treatments and transplant. Fortunately, the Icla Cares program provided financial assistance for gas, utilities, and groceries while Nasir was in treatment.
SueAnn is grateful for the support they received. She talked about the strain they endured.
She told us that the Icla da Silva Foundation gave her son joy. After learning about the support, Nasir wasn’t just happy for himself but “excited for the other families who are able to receive a happy, healthy, healed life.”
You Can Help
If you feel inspired by this story about Nasir, please consider donating to the Icla da Silva Foundation. We remove barriers to treatment by providing financial support for expenses during treatment and transplant.
Your gift will remove barriers for a patient in need during their bone marrow transplant.
Written by: Bret Itskowitch
Helping a 3-Year-Old Battle Sickle Cell
REMOVING BARRIERS – KAYALI’S STORY
Dellesha is the proud mother of five beautiful children. Her 3-year-old, Kayali, was diagnosed with sickle cell anemia at birth.
Kayali needed a bone marrow transplant. All of her siblings were tested and 11-year-old Makira, the oldest (and the bravest), was considered the best candidate to donate bone marrow.
But the transplant center was 160 miles away.
Dellesha uprooted her family to be closer to the transplant center. She could not work during months of treatment, so she cut expenses by ending their lease and putting everything into storage.
Once the bone marrow transplant was scheduled, a social worker from the hospital registered Kayali’s family for support.
The Icla Cares program removed the family’s barriers with a grant for gas, groceries, and some of that storage during Kayali’s treatment and transplant.
Fortunately, the transplant was a success.
Dellesha is grateful and has high hopes for their future.
She considers the Icla da Silva Foundation to be like family. While she was thankful to receive funds, she said she was very grateful for our concern. “I received so many texts, always asking how I was doing, how Kayali was. The Foundation is like family.”
Dellesha doesn’t like talking about what they went through, but she has heartfelt words for other patient families going through the same challenge:
“Have faith, because that’s what you’re going to need. Don’t give up Hope.”
You can help us support more patient families like Dellesha and her daughter. Even a small donation will help patients prepare for treatment with faith and hope.
PLEASE DONATE TODAY
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 ItskowitchSaving Lives for 30+ Years
The Icla da Silva Foundation has been providing logistical, emotional, and financial support to patients with diseases like blood cancer and sickle cell for more than thirty years.
For patients scheduled to receive a bone marrow or cord blood transplant, we encourage you to fill out the Patient Registration Form and request an application for support.
For supporters, your donation will provide more patients with critical needs on their journey to receive a bone marrow transplant. Please consider a financial gift to support our life-saving mission.
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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.