Sikcell: People living with Sickle Cell

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My daughter has Sickle Cell Disease

I have a 15 year old daughter who has sickle cell. When I see her in so much pain I feel so helpless. She was diagnosed at birth, so it's been a long 15 years(worth it). She was doing really good up until about 2 years ago. She would have minor pain crises and alot of fevers(enemy) but nothing to major. In the last two years she has had severe pain. She went from taking Advilt to control the pain to now she is taking dilloted through the IV and she is still in pain. For all the mothers out there I would advise you to love your child with all you heart but still allow them to be kids. I have to learn to let my daughter do things on her own. I have been told that I treat her like a baby. I do, but she is my baby. I am starting to realize she will be an adult soon and I have to learn to let go. It will be hard, but I will try. If anyone has any suggestions on how I can learn to let go please tell me. Adult of no adult she will always be my baby.

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Comment by Patricia Chibanda on September 17, 2009 at 2:29am: Im a mother of a 5 year old with SCD. Its been difficult just letting him be a boy but everytime i remind myself that i wont live forever and will have to equip him for life. I have taken the fight so seriously that i want to try the bone marrow transplant. ( we are currently in malaysa and i hope to have it done here) .

About a year ago , after numerous hospital admissions , we came accross a Ghanain doctor who is 60 yrs old and has SCD. This was very helpful for me because he treated my son with great understanding and compassion. He advised me to never let the crisis set in by making sure all infection is kept at bay, hydrating , no exposure to extreme temperature etc. In short you need to learn to manage the patient at home even before you get to the hospital. I pray that the transplant is a success!

Comment by loyses on August 11, 2009 at 8:56pm: My newborn daughter was just diagnosed and the thought of letting her do "normal kid things" scares me 2 death. I dont know anyone with SCD, can you please give me some insight into what our future may look like???

Comment by Sickle Cell Warrior on August 11, 2009 at 12:57am: I don't think it's just you...all parents go through this. I'm always going to be my mother's baby.