Living every moment like it's your child's last moment is a mental journey that I would never wish on anyone.
This is exactly what Sickle Cell is doing to my Prince Davon as well as so many other families across the nation.
Davon is my ten year old who suffers from Sickle Cell Disease. He has spent about 90% of his life inpatient in the hospital, has had ten surgeries, to include the removal of his spleen and gallbladder. He has been on blood transfusions since he was two months old and will continue on blood exchange transfusions for the rest of his life. He currently needs 5 to 8 bags of blood every 4 weeks and has a double lumen port in his chest. He sometimes uses more than 8 bags of blood in a month. He has a two page list of daily medications and he has multiple foods, medication, pet, and environmental allergies. Davon has had 2 strokes and has damage on both sides of his brain and has recently developed a brain malformation in 2012. He currently sees 23 specialists at Children's National Medical Center, including his primary care provider.
It is important to raise the awareness for Sickle Cell because for children, the quality of care is bad and once they transition to adult care there care becomes horrible. They often do not receive the care that they need and are labeled as drug addicts by medical providers. Employers don't understand, making it hard for parents and guardians to get or maintain a job to provide the basic needs for their family. Social Services/Government Agencies don't understand making it hard for families to get the resources they need and they enforce laws that should not apply to their situation. Families and friends don't understand which often leave individuals and families fighting their battle alone. It motivates me to do more when I hear the Sickle Cell community won't seek medical attention because of how they are going to be treated and to hear the many stories of the Sickle Cell Warriors who have loss their lives and should not have, this applys to children and adults.
This illness has been around far to long for so many people to not understand its impact or get involved.
Team Sickle Cell! I am the difference! But Together We are the Difference!
Helping Young People Excel and Develop's Davon D. Williams Sickle Cell Foundation has been developed to increase the awareness around Sickle Cell Trait and Disease and provide a link to the bridge that separates programs and services from those affected by Sickle Cell. Funds raised will be used for things such as a resource to fund equipment, supplies, space, food, medication, childcare, parking, meal tickets, gift cards, food, clothing, holiday support, transportation, utilities, events, activities, etc.
Sickle Cell Movement: Davon D. Williams Sickle Cell Foundation
Davon D. Williams, the Susan G. Komen of Sickle Cell.
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