Meet Elizabeth

The girls’ mother, Tosin, knew there was a chance that Elizabeth would have Sickle Cell when she was pregnant. The most common genetic disease in the country, 1 in 800 African Americans carry the trait. As both parents were carriers, it was not a surprise when her amniocentesis came back positive. “I went to counseling. The doctor cautioned me that I would not be able to keep a job because my baby would be in and out of the hospital. I remember that the first thing I heard after my C-Section was ‘sickle cell.’ I was in denial,” recalled Tosin.

Unlike other children with Sickle Cell Disease, Elizabeth never had any severe symptoms. “I remember not being able to go in the swimming pool with my sister, and having food restrictions,” said Elizabeth. However, from the moment that Elizabeth was born, Tosin began asking about transplants. “I knew that bone marrow transplants were successful treatments for children with Sickle Cell. I felt like we were always waiting for something to happen to her – the anxiety was paralyzing.”

At first, Tosin was given disappointing feedback. “The doctors we were seeing told me that even if they find a matching donor, the transplant team may not agree because success rate is not high.”

That changed in 2013, just before Elizabeth’s 5^th birthday when Tosin brought the girls to Hackensack Meridian Joseph M. Sanzari Children’s Hospital to meet with Dr. Jennifer Krajewski, a Pediatric Stem Cell Transplantation specialist. “At that point, Dr. Krajewski told me that transplant was very possible and Esther was Elizabeth’s perfect donor.”

Dr. Krajewksi explained, “Transplanting a sickle cell patient who doesn’t have severe symptoms is somewhat controversial. However, because she had a matched sibling, I felt strongly that she should have the transplant given the success rates of 95-100% cure with matched sibling BMT. Transplanting earlier, under the age of 10, significantly reduces typical complications of transplant.”

On March 27, 2014, Elizabeth underwent a bone marrow transplant, with cells donated from her sister. Since that time, Elizabeth is considered cured and has no symptoms.

After the transplant, Tosin was very excited. “I couldn’t believe it. My world changed. I felt like we received a second pass at life.”

Elizabeth has few memories of the transplant. She remembers it being difficult to stay still in the MRI machine and the broviac catheter being annoying. “I remember being scared when my hair came out,” she said.

Elizabeth feels very fortunate. “I am thankful to Hackensack University Medical Center, my sister, and my parents that I have a second chance.”

Dr. Krajewski explained that while using a sibling donor like Esther is the most successful, this type of transplant is unfortunately not available for most sickle cell patients, with only 15% of patients having a matched sibling. “For normal bone marrow transplant, matched sibling donors represent about 25% of the cases. However, for Sickle Cell, because it is a genetic trait, the odds of being matched are even less as the donor sibling can’t have sickle disease.”

Tackle Kids Cancer funding supports increasing clinical trials in bone marrow transplants. Dr. Krajewski elaborated, “One of the biggest needs is the ability to run more clinical trials. We participate in a few with different organizations, but with more funding to support Sickle Cell dedicated researchers, we would be able to offer more trials to patients.”

Now in 7^th grade, Elizabeth dreams of being a biochemist or a chemical engineer and enjoys playing volleyball and basketball. “Before this, my future didn’t seem possible. Living with Sickle Cell is a stressful experience. You never know when a pain crisis will occur. Everybody deserves the chance I received.”