For the love of Thor: Living with Sickle Cell

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HAVELOCK, N.C. (WNCT) – In the United States, approximately 100,000 people suffer from sickle cell disease, and 2 million Americans have sickle cell trait.

Thor Aleister Forte is one of those suffering from the chronic illness.

The inherited blood disorder causes fatigue, dizziness, fatigue and low oxygen in the body.

Rodney and Tameka Forte are Thor’s parents, and their fight began in 2010.

“About 21 weeks into my pregnancy, the doctors did a blood test, the blood test came back positive,” said Tameka Forte. “And I was like how is that possible because I checked my Marine Corp medical record and it clearly states that I am negative.”

A human error that both Tameka and Rodney didn’t see coming.

“I could see Rodney out of the corner of my eye, and he had a like a couple of tears because nobody wants their son to be born sick,” Tameka Forge said. “You know, with Sickle Cell Anemia, you sick all the time.”

“The biggest thing that helped me stay even keel, is faith, and my wife and Thor,” said Rodney Forte.

The Fortes didn’t let the news take away from the joy of life.

On Septemeber 27, 2010, Tameka and Rodney Forte welcomed their source of happiness into the world.

“He (Thor) was like this little bundle of joy, and I was like ‘Oh my goodness,'” said Tameka Forte. “Like what am I supposed to do now.”

Unfortunately, it was the first of many trips to the hospital for the family.

“Thor’s first transfusion; I want to say 6 months after he was born; it was a little difficult,” said Tameka Forte.

Another revelation would soon follow in 2014 after doctors noticed a small discrepancy.

“We diagnosed him pretty early on with what we call abnormal transcranial doppler, which is a complication of Sickle Cell disease that places you at risk of getting a stroke,” said Dr. Beng Fuh, director of Comprehensive Sickle Cell at East Carolina’s Brody School of Medicine.

The new findings put a halt right in the middle of Thor’s life.

“We had to put a metal port, which makes it easier to draw blood and infuse blood,” said Fuh.

The metal port serves as a reminder of the fight, one the Fortes continue to battle.

“It was a lot,” Tameka Forte said. “I was angry and Rodney doesn’t know, but sometimes I did go in the closet and cry, and that was to relieve stress, and it felt so good. But it’s okay to cry. It’s okay to feel weak, and I’m okay with it.”

Throughout the positive and negative for Thor’s parents, the love for their child is what keeps them going.

“Every single day, come home, he makes me smile no matter how bad it’s been at work,” said Rodney Forte. “No matter how long I’ve been at work, when I come through that door, and I hear Da-Da, and he runs to me and gives me that big hug that makes everything at work goes away, that makes all those bad situations go away.”

With a condition like Sickle Cell, medical experts say it isn’t always easy for kids.

“These are individuals who sometimes have to deal with pain every single day of their life; some of them have to take pain medications that impact their ability to function at school and on a daily basis,” said Fuh.

The Fortes say it’s all about remaining positive even with obstacles.

“It’s almost like, well why do we even go through this process of educating people when they’re not educating themselves, you have to be proactive,” said Tameka Forte.

As Thor gets older, things are looking up for the family, thanks to their hope, faith and prayer.

“I taught Thor how to say this prayer, ‘Dear God, thank you for healing me in advance, and he’s still saying that prayer to the day cause you have to thank God in advance,” said Tameka Forte.

“The belief that you can accomplish what you want to accomplish no matter the naysayers say,” said Rodney Forte. “Now with hope, once again, you might have to sacrifice something but know that the outcome of that decision that you make to sacrifice is going to be a positive outcome.”

The Forte’s still need your help and support.

Thor has yet to find a perfect match for a bone marrow transplant, which is why we’re asking you to join the “Be the Match” registry.

You can donate or enlist right here: https://bethematch.org/

If you would like to follow Thor’s journey to finding donor, you can like his Facebook page here: https://www.facebook.com/TEAMTHOR27/

Copyright 2019 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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