Taking 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. 

Not yet.

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

Donate

Together we will save more lives.

Written by: Bret Itskowitch