Sickle Cell Disease Association of America
Philadelphia/Delaware Valley Chapter
5070 Parkside Avenue - Suite 1404
Philadelphia, Pennsylvania 19131
215-471-8686 tel  215-471-7441 fax
scdaa.pdvc@verizon.net

Stories of Caring
In performing our mission of providing resources and assistance to children, adolescents and families affected by sickle cell disease and sickle cell trait, we often encounter remarkable individuals whose talent, drive and desire to help others propel them to high levels of performance in spite of the disease.

Nazir Alston
Nazir Alston is an inspiring young adult who uses his talent and life experience to provide insightful details and sound direction about living with Sickle Cell Disease.

Nazir is wise beyond his years and we encourage you to read about his creative endeavors and outstanding achievements by clicking the link below.
Isaiah Kai Huff

 

Isaiah is the youngest of his siblings; he has 2 brothers 18 and 20 and 1 sister 21.  Isaiah was diagnosed with Sickle Cell shortly after his birth and it has been a long haul ever since.  Isaiah has been hospitalized over 20 times in his 6 years of life.  I have been there every step of the way and by his side whether he spent 2 days or 5 in the hospital.  The winter months seem to affect Isaiah the most. Despite his problems with Sickle Cell, Isaiah has been a wonderful young boy; everyone who comes in contact with him loves and adores him.  We have hosted several Annual Sickle Cell Blood drives in honor of Isaiah; his youth group at church took up a collection and donated toys to the Sickle Cell Department of St. Christopher’s Hospital.  Isaiah attends a school with predominantly White children. Through the efforts of Isaiah and I, we made his teacher, nurse, principal and staff members more aware about Sickle Cell and what to expect from a child who battles this disease.  Isaiah is very knowledgeable about his condition and will speak of how it makes him feel when he goes through his crisis.  He often questions, why God made him like that, and I tell him all the time, because he is special and he is going to grow up helping other people who also have the disease.  I tell him, you are going through this so that you can be stronger and able to help.

Isaiah is a very bright boy; his grades are awesome, despite missing school at times. Isaiah is physically 6 years old but I often hear people say, “He’s been here before” or he thinks he is “16” or where did he come from?  It’s quite amusing, you would think a kid who endures so much pain would be down and not happy but Isaiah is the opposite. Isaiah loves to draw and make up stories, he is a big fan of Thomas the Train and has an interest in trains in general, he has learned to read very well (he shocked me) and he has a great positive attitude.  He attends church every Sunday.  He joined the Usher board (on his own), he participates in youth service and has sang, danced and did a resolution for Christmas. One day Isaiah is going to be an inspiration for many others, who battle this disease, he has already started! He has so much support and love around him it’s amazing, every time he is hospitalized, the calls, texts, emails and prayers through Facebook are over pouring. We thank God for the ongoing support that our friends, family and community members show us when Isaiah is going thorough pain.  It’s also a mother’s pain to watch her child hurt so bad and cannot do anything to help. Our family has and will continue to support the fight against Sickle Cell Disease

We are a family and we are Sickle Smart.

Isaiah and Shanna Huff