A love letter to a future bone marrow donor

Age: 15
Occupation: High-school freshman
Favorite activities: Playing trumpet in the band, swimming, flying his drone, making new friends
Favorite school subjects: Science, culinary arts (and lunch)
The best word to sum him up: Kind

Meet Robert. He is in search of the perfect match – on a cellular level. He is looking for a bone marrow donor. His mom, Jacklyn, has a few words to share with the person who might be that perfect match. Join the registry to save a life.

Dear future bone marrow donor:

My son, Robert, was born with sickle cell disease, a lifelong genetic condition. I didn't know much about sickle cell before I had Robert. I've learned that lots of other people don't know much about it, either.

Here's some things to know about sickle cell disease

Many of the 100,000 Americans living with sickle cell disease in the United States are of African or Hispanic heritage. But the disease can affect anyone, including many people of southern European, Middle Eastern or Asian Indian heritage.

Robert describes living with this genetic disease to his friends like this: “Sickle cell makes your red blood cells banana shaped instead of round. They can get stuck while flowing through your blood vessels. If a lot of them clump up, it can cause a lot of very, very sharp pain in many different parts of your body.”

Sickle cell requires constant health management and even if we do our best, Robert is at greater risk of stroke, lung infections and organ damage. Robert is also at risk of having a shorter lifespan. But having a bone marrow transplant can be a cure for sickle cell.

This is what sickle cell disease looks like for us

Up until recently, things were manageable. Robert took his pain and anti-inflammatory medicines. Sure, he can't swim much (big temperature swings cause the sticky banana-shaped cells to slow down in his blood vessels and clump together, leading to a "pain crisis”), and he can't run much because the anemia the disease causes makes him tire easily. But, for the most part, day-to-day life was okay.

In the summer of 2023, things took a turn for the worse. Right before his first year at his new high school, Robert developed severe, debilitating pain in his chest. He had to take so many pain medications that it was hard to stay awake to do any schoolwork. He also couldn't march on the field to play his trumpet the entire football season.

We spent many nights in the hospital, sometimes for weeks at a time. He even went to the intensive care unit (ICU) because his chest was hurting so bad that he wasn't taking deep breaths, and the CO2 level in his blood was high, causing his oxygen levels to drop. Robert, always the optimist, tells others he was “happy” in the hospital because the nurses and doctors were so kind to him. He's the type of person who never gives up, rarely complains – even when he's in a lot of pain – and continues to send out kindness that gets reflected right back to him.

I lost my job from being at the hospital so much. And Robert's stepdad missed a lot of work. There's been a lot of stress on the whole family. Robert is very close with his siblings, and they get very upset when he's in the hospital or hurting a lot.

Because things got so bad, his doctor recommended a new treatment for his sickle cell disease. They also talked about the one cure for sickle cell disease – transplant. Sure, transplant has risks. But our family feels that those risks are worth taking for a kid who lives with severe pain and faces life-threatening infections, organ damage and stroke.

Some final words to Robert's future donor

I hope to cure someone else with my healthy bone marrow. I'm willing to help somebody else because I don't want anybody to go through this.

Robert's older sister isn't a match. His younger sister isn't a possibility because she also has sickle cell disease. This is common – 70% of people don't have a match within their family and rely on the kindness of strangers.

Registering to be a bone marrow donor takes minutes. But the feelings of how much you've helped last a lifetime.

I'm telling everyone I can how important it is to sign up for the registry – especially African-Americans – because we are underrepresented in the registry.

When I think about Robert's future, I just want what all parents want: For him to be a healthy teenager without pain or frequent hospital stays. I want him to march with his friends in the band and enjoy the instrument he loves.

I don't know who I could match with and possibly make a life-changing difference and you don't know either.

As I tell Robert, “You don't know until you try.”

All my heart,

Jacklyn

Join the registry to save a life

If you're between the ages of 18 and 40 and have just 5 minutes to spare, you can receive a free home-test cheek swab kit from the National Marrow Donor Program to see if the proteins in your cells match the proteins in the cells of someone suffering from sickle cell disease, leukemia, or 73 other diseases that can be cured or treated with a bone marrow transplant. Learn more about bone marrow donation and join the registry to save a life.

Learn more

The Sickle Cell Disease Program at Children's Health is one of the nation's largest serving pediatric patients. We provide comprehensive care with a focus on the prevention of disease complications using the newest treatment strategies. Learn more about our program and services.