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Did you know that Sickle Cell Anemia affects about 100,000 people or that it occurs 1 in every 365 Black births in the US?

Did you know that 1 in 13 Black babies is born with sickle cell trait?

Did you know that 24% of men with Sickle cell Anemia experience infertility because of the disease?

Did you know that many people with Sickle Cell Anemia live their whole lives unsure of their fertility status until they are ready to conceive?

What would yu say if we told you that the top-of-the-line medication (Hydroxyurea) you have been on for the last 16 years of your life, keeping you out of the hospital with excruciating pain, was the same medication that is causing you to be infertile? 

So, what is Sickle Cell Anemia?

My husband of 7 years has Sickle Cell SS, which is an inherited disease that causes the red blood cells in his body to contort to a sickle or half-moon shape, which causes the red blood cells to die early, leaving a shortage of healthy red blood cells what can block blood flow causing excruciating pain. The symptoms of Sickle Cell vary from person to person but are always painful, not commonly understood, and there is no cure for this disease. If you have never heard of it, it’s not as rare as you think from the quiz above. Treatments for this disease include lifelong medication, blood transfusions, and rarely a bone-marrow transplant. Not everyone with Sickle Cell experiences infertility because, as I said, symptoms vary from person to person. 

So how did we get here? We ask ourselves that all the time……

After months of going back and forth about when we wanted to start a family and when Leia would stop taking birth control, we decided that 2019 was our year! ……That was 4 years ago. We knew something was wrong after 8 months of trying on our own but had no idea the long road we were about to embark on to figure out the problem. After a painful, unmedicated HSG, lots of blood work panels, office visits, and tests for Leia, everything came back normal. It was more complicated for Kriston. Not many doctors know what to do with patients who have SCSS and experience trouble conceiving. It ends up being us educating them on how to care for the disease. After a very expensive and painful Testicular Sperm Extraction or TESE in December of 2020, we were left with only 9 abnormal sperm that were eventually destroyed as they could not be used. 

The next plan was to roll the dice and have 1 very dangerous year off Hydroxyurea in hopes that it would boost the production of sperm. After hours upon hours spent in the HR, 5 hospital stays, 4 transfusions, Covid-19 symptoms turning into acute chest syndrome and pneumonia, we were right back at square one…..it didn’t work. Our marriage, hope, and faith have been tested more than we could have ever expected. 

After months and months of couples therapy and individual therapy, we have accepted the cards we were dealt but are determined that it isn’t the end of the line for us. We started to research other options. Thank goodness for therapy yall! With Embryo Adoption we can have the family we want, but the cost is very high and still not a guarantee. 

Fast forward to September of 2022, we chose Aspire Fertility Institute in Houston TX to help us on our journey. We had several unpleasant experiences that wasted a lot of our time and decided to work with NEDC in Knoxville TN. After 8 months of constant paperwork, lots of email chains, fingerprinting and background check appointments, blood panels, home study documents, and interviews we were finally cleared to fly to Knoxville, meet the doctors, tour the facility, and get a couple tests done to medically clear us for a transfer. We discovered Leia’s 2 small fibroids have shifted and now are in the way of scheduling a transfer. Leia now needs to have surgery as soon as possible to remove them and then wait 4 months to heal before scheduling anything. We hope during this time we can raise enough money to finally experience the light at the end of the tunnel, but we need help. 

As a black couple living in the United States, we understand the cards are already stacked against us and that our journey to parenthood will be unconventional, tough, and one hell of a ride, but it’s our own unique story that no one else can tell, but us. With insurance covering 0% of fees, medications, and procedures needed, we are asking for your help. All we want is to have a family. We appreciate you taking the time to read our story and are grateful for any donation of any amount. 

May God Bless You.

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