Madison 12yrs old was born with sickle cell disease diagnosed at birth. She has experienced many trails that a person normally doesn't go through. Madison has had issues ranging from severe health problems, several surgeries, followed by hospitalizations, a stroke at the age of 4 and chronic blood transfusions for 9 years. While the majority may not know, that this disease is considered an incurable disease that predominately affects black communities.
Well Madison mom(Latrice) couldn't accept and wouldn't accept that this disease was incurable due to the growth of new technology and discoveries. Latrice researched and spoke to her doctors about new innovative treatment options. She finally found some information that was worth her attention but would it work?
How could she be sure this was the answer?? So many difficult questions filled her mind but if there was a possibility of her helping to cure Madison then she would dig deeper and have to figure it out. Her hard work and research paid off which led myself sitting down with Latrice and Madison to interview them of how her mom determination led to Madison being cleared 100% Sickle Cell Free. Latrice didn't want to stop there she wanted to share her daughter story to help raise awareness andin hope that she can help another family.
With Your daughter being diagnosed with sickle cell since birth how has it changed your family?
With Madison being diagnosed with sickle cell at birth and the complications that followed, it initially changed our family significantly. As a baby, she would get fevers and be in the hospital 3-4 days almost every month. I had to leave my job because my husband was deployed, we didn’t have family here, and I had 2 girls to take care of. During the first year my church family, Harvest Family Church, helped me out tremendously by making sure my oldest daughter was cared for while I was in the hospital with Madison, usually at Duke Children’s Hospital. Around 9 months of age Madison was diagnosed with splenic sequestration (enlarge spleen), caused by the sticky, irregular shaped sickle cell blood causing the blood to get trapped in the spleen. Due to her age the only treatment was chronic monthly blood transfusions to help force the blood out of the spleen. We did this from around 10 months until she was 2 years old, when she had surgery to remove her spleen. During the course of the next few years Madison experienced several hospitalizations ranging from various complications from pneumonia, a stroke at the age of 4, having ports placed, monthly blood transfusions for 9 years, and her gallbladder removed.
What are some of things your daughter likes to do? And what’s next in the future for your daughter now that her sickle cell is cleared. She is a normal pre-teen that enjoys hanging out with family and friends, playing video games, watching movies, cheerleading for her school, reading and eating. The sky is the limit for her! Once she has completed her recovery she will be able to resume normal activity without the limitations that she had to endure with sickle cell, without the multiple doctor appointments that would cause her to miss out on activities and school, and without all the medications.
What words of advice can you give to another parent that may be going through similar trials? I know it is hard and very difficult to see your child going through this process, keep praying and encouraging them. Talk to the team of doctors, make sure you are included in the decision making process for your child. You are a vital part of your child’s medical team and make sure they know that. If you need help or need a break, don’t feel guilty about it, you have to take care of yourself as well. Try not to feel guilty during that trial process, wondering if you made the right decision, it is a short term trial for a long term benefit. Trust yourself and know that you know, and want what is best for your child.
Is there any advice your daughter would like to tell another child that may be diagnosed with sickle cell too. Madison’s advice is to surround yourself with positive people who will support you. If you are going through transplant, her advice is never give up. Some days you will feel bad and other days you will feel good.
That would you like for the readers to know that they might not already know. I would like the readers to just know that there are options; there is a cure for sickle cell disease. I would like for them to do their due diligence and talk to their child's provider. Find out if this is a viable option, advocate for your children, and always push to provide the best quality of life for them. This process takes a huge sacrifice for families, but to hear my daughter say it was worth it was everything for me.
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