Spotlight Archives - Friends of Karen

Sibling Spotlight – Alessia & Vida

Rob Madrid — Tue, 01 Sep 2026 14:09:02 +0000

Some sisters share a bond. Alessia and Vida share a gift that changed everything.

Eight-year-old Alessia and her two-year-old sister, Vida, are as different—and as close—as two sisters can be.

Alessia is a thoughtful, studious observer with a playful side. Vida brings the spunk, whether she’s swiping Alessia’s paintbrush during an art therapy session with Friends of Karen’s Siobhan or suddenly turning the room into an Encanto dance party.

But beneath the laughter and sisterly mischief is an extraordinary bond.

Alessia was born with Sickle Cell Disease and spent much of her early childhood facing pain and frequent hospital visits. Then, little Vida gave her big sister something truly life-changing: a bone marrow transplant that gave Alessia a new beginning.

And today, Alessia is thriving and shining brightly.

Vida’s name means “life”—a fitting name for the little sister who gave Alessia just that.

At Friends of Karen, we’re honored to support families like Alessia and Vida’s, creating space for children to heal, connect, express themselves, and simply be kids.

Their story is a beautiful reminder of the extraordinary ways families show up for one another—and of the love, hope, and joy that can shine through even the hardest journeys. We invite you to read below to learn more about Alessia and Vida’s story and how their mother, Maite created something beautiful and informative to fill a very important need.

Alessia, how would you describe Vida?

Hmmm…very mischievous! Very loving too (most of the time)- she hugs and kisses me but sometimes steals my chair!

She also donated her bone marrow to you. Do you remember that time? Can you tell us about it?

Yes, she did! I had to stay in the hospital for a very long time after. My hair fell out and we had to be very, very careful about germs. I felt very stuck. The room was only this ( tiny) big and my mom and I were stuck in the room. I felt like snow white stuck in the castle. I could only eat very tiny amounts or I would get sick. I had my G- tube. I did lots and lots of legos and had sessions with you ( Friends of Karen, Sibling Support Specialist, Siobhan.)

What did we work on together?

Before the transplant you prepared me for the hospital and the bone marrow transplant and the G tube. We had zoom sessions when I was stuck in the hospital and then you came to see me and Vida when I got home. My favorite thing was sketching and expressing ALL the feelings.

Do you have advice for other children with Sickle Cell Disease?

Don’t go outside when it is snowing! That used to cause me a lot of pain but now after the transplant I can go outside in the snow.

What else can you do now after the transplant that you weren’t able to do before?

I can play in the snow and make a snowman! And dance in the rain! And go in the pool and be cold after! Now I can go to school. I love school! I love everything about school, especially library and art.

Vida, would you like to share anything?

I love Alessia and art!

September is National Sickle Cell Awareness Month. This month is dedicated to raising awareness and educating the public about sickle cell disease (SCD), a lifelong inherited blood disorder affecting millions worldwide, and the importance of support for those living with the condition. It is the most common inherited blood disorder in the US. Friends of Karen is proud to provide emotional support and illness education to children diagnosed with SCD, their siblings and families.

It is said that necessity is the mother of invention, and this phrase rings true with one extraordinary Friends of Karen family. Looking for resources to support her daughter, Alessia who was diagnosed with SCD, Maite Rodriguez dreamed of writing a children’s book to explain the disease in an engaging and age appropriate way. With creativity, collaboration and determination, this dream has come to fruition as the beautiful book “Just Like the Moon” has been published. We honor Maite for her advocacy and generosity in creating a resource that not only her own daughter will benefit from, but many other children as well. We invite you to read the description of the book below and share links for purchase.

The post Sibling Spotlight – Alessia & Vida appeared first on Friends of Karen.

Will I Feel Anything?

admin — Mon, 02 Jun 2025 16:46:42 +0000

With the imminent passing of my dear son Luke upon us, his last question to me was, “Will I feel anything?” I was sure he was referring to the pain he was enduring as a result of being ravaged with osteosarcoma (bone cancer) which had spread throughout his body. I immediately answered, “No sweetheart, you will just fall into a beautiful peaceful sleep.” Only by the grace of God did he hear those words.

Read the full article on Forbes.com.

Luke and Cara. Friends of Karen is a non-profit that provides vital financial, advocacy, and emotional support to families navigating the challenges of having a critically ill child in the New York tri-state area, including during end-of-life and bereavement.

The post Will I Feel Anything? appeared first on Friends of Karen.

Just Like the Moon

admin — Fri, 19 Sep 2025 20:40:45 +0000

Friends of Karen Mom Explains Sickle Cell Disease in her new Children’s Book, Just Like the Moon

It is said that necessity is the mother of invention, and this phrase rings true with one extraordinary Friends of Karen family. Looking for resources to support her daughter, Alessia who was diagnosed with SCD, Maite Rodriguez dreamed of writing a children’s book to explain the disease in an engaging and age-appropriate way. With creativity, collaboration and determination, this dream has come to fruition as the beautiful book Just Like the Moon has been published. We honor Maite for her advocacy and generosity in creating a resource that not only her own daughter will benefit from, but many other children as well. We invite you to read the description of the book below and share links for purchase at Walmart, Barnes & Noble, and Amazon.

Just Like the Moon is a tender illustrated story told by Zoe, a six-year-old girl who skates through flowers and dreams, and lives with sickle cell anemia. In her world, blood cells are shaped like crescent moons, hospital visits become secret missions, and hope glows like a full moon in a dark sky.

With sweetness and truth, this story gently guides the reader through the experience of chronic illness, while celebrating the magic of being different, the strength of childhood, and the comfort found in love and community.

Just Like the Moon is an invitation to see with empathy, to understand with the heart, and to discover that—even in the face of challenges—every child shines in their own way.

Just Like the Moon is available at:

Walmart.com

Barnesandnoble.com

Amazon.com

The post Just Like the Moon appeared first on Friends of Karen.